tag:blogger.com,1999:blog-60465480214216669542024-03-05T14:52:57.694-06:00Evans Syndrome Community NetworkEvans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-6046548021421666954.post-1542362005303786772012-11-18T18:13:00.000-06:002012-11-18T19:43:42.678-06:00Evans Syndrome: A Family Affair<b><i>Contributed by Joe Camilleri</i></b><br />
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<h4>
Introduction</h4>
In 2007 and again in 2010, I was diagnosed with <a href="http://rarediseases.info.nih.gov/GARD/Condition/6389/Evans_syndrome.aspx"><span class="s1">Evans Syndrome</span></a> - a rare autoimmune disorder in which the body produces antibodies that destroy the red blood cells, platelets and white blood cells. It has no known cause and is not believed to be hereditary. However, my situation appears to be unique even for this relatively rare disease.<br />
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<h4>
Background</h4>
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I was born on the island of <a href="http://en.wikipedia.org/wiki/Malta"><span class="s1">Malta</span></a> and immigrated to the United States in the 60's with my family as a child. My older brother, who was also born in Malta, was diagnosed with ITP as a baby. The disease went away without any treatment.</div>
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I had an uncle in Malta, who passed away from an unknown blood disorder before I was born. It is now speculated that the disease might have been <a href="http://rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&diseaseID=5194"><span class="s1">ITP</span></a> and/or <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001597/"><span class="s1">hemolytic anemia</span></a>. His son, who eventually immigrated to Australia, was diagnosed with ITP several years ago. The disease went into remission after splenectomy. He passed away last year but I don't have details because I had only recently discovered that he was my cousin.</div>
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My sister, who was born in the United States, was diagnosed with ITP about 10 years ago. She was treated with Prednisone and the disease went into remission where it has remained.</div>
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<h4>
My Struggle</h4>
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I was diagnosed with Evans Syndrome in 2007. It was initially treated with Prednisone but its effects were very short-lived. My hematologist recommended splenectomy but I refused since my spleen was healthy and functioning normally. A very low platelet count helped my argument against the surgery. </div>
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At that time, <a href="http://www.rituxan.com/hem/nhl/safety/index.html?cid=rit_we_F001051_P000517&c=MBRTNH7383&utm_source=google&utm_medium=cpc&utm_term=rituximab%20side%20effects&utm_campaign=Google%20General%20Branded%20(Nov11)&gclid=CKT324yB7a4CFZFR7AodmF5lLg"><span class="s1">Rituxan</span></a> was being used as a cancer treatment but not widely used for the treatment of other diseases. My hematologist said it had to be a last resort but I convinced her to try it anyway. The treatment appeared to work after several weeks.</div>
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The disease went into remission for six months, after which, my platelets dropped sharply. Once again splenectomy was recommended and once again I refused. Rituxan was tried again and, after several weeks, the disease again went into remission.</div>
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In September of 2010, I was once again diagnosed with Evans Syndrome. This time the disease was a little harder to get under control and I received many blood transfusions. I was given a dose of <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000570/"><span class="s1">Cytoxan</span></a> to stop the hemolysis and once again treated with Rituxan. After several weeks, this miracle drug once again came to my rescue.</div>
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<h4>
My Daughter's Battle</h4>
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Immediately after I had recovered from my illness, my daughter started complaining about tingling in her legs and occasionally seeing spots. She had a sinus infection and we thought that it was somehow related.</div>
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Her physician recommended a CT scan in order to rule out a brain tumor. The day after the CT scan, my daughter started vomiting. We took her to the doctor again after this continued for several days. We were told that it was simply the flu and that the results from her CT scan were normal.</div>
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The vomiting continued on a daily basis and many tests were done but each time we were told that everything was fine. The nurses at the physician's office were clearly becoming annoyed with my many phone calls. My daughter was referred to a surgeon (not really sure why) who simply said she did not need surgery but recommended another CT scan. My daughter had not been able to hold down food for weeks and now she was asked to drink the Barium shake. That was horrible!</div>
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With still no answers and increasing desperation, we decided to take my daughter to Emergency because her finger tips appeared shriveled. I thought that she might be dehydrating. After a very long examination, the ER doctor said my daughter's kidneys were functioning at 16% and that she would be admitted for treatment.</div>
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<h4>
The Real Nightmare Begins</h4>
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The sinus infection could not be treated until my daughter's kidneys had recovered to a safe level. After a couple of weeks of treatment, her kidneys stabilized and antibiotics could be administered. Immediately, my daughter started complaining about intense tingling in her legs and trouble moving them. The antibiotics had triggered an autoimmune response. After the diagnosis was repeatedly changed, it was finally considered to be <a href="http://en.wikipedia.org/wiki/Acute_disseminated_encephalomyelitis"><span class="s1">ADEM</span></a> - an immune mediated disease of the brain. Left untreated, the paralysis which started in the legs, would work its way up the body until the respiratory system was affected resulting in death.</div>
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Treatment for ADEM was identical to that for Evans Syndrome - Prednisone and <a href="http://en.wikipedia.org/wiki/Intravenous_immunoglobulin"><span class="s1">IVIG</span></a>. After her condition stabilized, my daughter was released to a rehabilitation hospital to try to regain the use of her legs. She was told that she may always have a mobility problem.</div>
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My daughter went to physical therapy and returned to school in a wheelchair after missing much of her senior year of high school. Her goal was to walk again when she graduated. She achieved her goal and made plans to attend college but not before following in my medical footsteps.</div>
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<h4>
Evans Syndrome Strikes Again</h4>
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Everything seemed to be returning to normal when my daughter complained about feeling badly. We assumed it was due to her impaired kidney function and took her to the hospital. Tests showed that her hemoglobin had dropped sharply. Since she was still technically a pediatric patient, her treatment was a little different than mine. Her hematologist had her do plasma pheresis, then prescribed Immuran, Prednisone, IVIG, countless units of blood, and finally Rituxan. </div>
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My daughter's hemoglobin was 3.1 at its lowest point. It took about 8 months until her hemoglobin approached the normal range. After it did, it was her platelets turn to crash.</div>
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Since she had turned now 18, we transferred my daughter's care over to my hematologist. He started with Prednisone but, like me, she showed only a modest initial response then nothing. She started a Rituxan treatment and ultimately responded as I did.</div>
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<h4>
Fighting the Disease</h4>
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Rituxan appeared to play a key role in combating Evans Syndrome for my daughter and I. However, I believe that a good support system and faith are also keys to overcoming this disease. To me, the psychological stress was far worse than the physical symptoms.</div>
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For anyone interested, I kept a diary of my second battle with Evans Syndrome. You may read it or watch the video presentation at <a href="http://passionwind.com/saga2010/default.asp"><span class="s1">http://passionwind.com</span></a>. It was my intent to record my most intimate thoughts as I once again battled this terrible disease. I was sure that God would once again answer my prayers. What I experienced was beyond my wildest imagination. My story is hard to believe but none of it is fabricated or exaggerated.</div>
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I pray that you may find a bit of comfort or inspiration in what I have written. If you or a family member is experiencing Evans Syndrome, it is easy to feel overwhelmed and desperate. However, never lose hope. God answers prayer. I am not sure I honestly believed that before I got sick. I am quite convinced of it now.</div>
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<span style="background-color: #993333; color: #ffcc7f; font-family: Arial, Helvetica, sans-serif; font-size: xx-small; line-height: 12px;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span><br />
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<br />Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-49045447672403403122012-08-06T22:11:00.000-05:002012-08-06T22:18:27.396-05:00Carter's Story<span style="font-family: Verdana, sans-serif;"><i>Contributed by </i><b><i>Carter's Mom</i></b></span><br />
<span style="font-family: Verdana, sans-serif;"><b><i><br /></i></b></span>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVTZuccoLwH69Vbq8SNZd46dIklH9Hh9mvy2ZtMaYiNiWJRw7QOc9gkXj18l6NAKzvIVqqDUgGwhkeghi7FiXJQLmyf5HjNTDKqZ_nnUDHmk922yfG5pKVYSrQpFTrV-2gQo4NJbdEbcVd/s1600/Carter's+Family.jpg" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVTZuccoLwH69Vbq8SNZd46dIklH9Hh9mvy2ZtMaYiNiWJRw7QOc9gkXj18l6NAKzvIVqqDUgGwhkeghi7FiXJQLmyf5HjNTDKqZ_nnUDHmk922yfG5pKVYSrQpFTrV-2gQo4NJbdEbcVd/s320/Carter's+Family.jpg" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Carter's Family</td></tr>
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<span style="font-family: Verdana, sans-serif; font-size: 12pt; line-height: 115%;">Our son, Carter, is a
fun, energetic, absolutely adorable almost-3-year-old little boy. His story began
when we found out we were spontaneously expecting not one, but two babies at
our 11 week ultrasound. It was a smooth, uneventful pregnancy until my
water broke, out of the blue, at 25 weeks.</span><br />
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">Fraternal twin boys
were born 3 days later, 15 weeks early, weighing just under 2lbs each.
The first 3 months of life were spent in the NICU
(neonatal intensive care unit) at the University of Michigan. It was touch
and go for a while and a roller coaster of ups and downs but we were extremely
blessed that our boys came home strong and healthy.<br />
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One year from bringing the boys home, feeling settled into our life
as a family, we were out in the yard on a snowy winter day for the
boys' first sled ride. They were all bundled up in baby-blue snowsuits, and
wearing sunglasses. We had fun pulling them around. When we came
inside and were taking off Carter's hat, we noticed some purple
dots where the hat sat on his forehead and around his chin. We chalked it
up to either some sort of a heat rash from being bundled up or to having
sensitive skin like his Dad and blamed the hat for causing the irritation.
This was on a Saturday. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">A curious and nervous
mom who is the need-to-know type, I jumped on the computer to figure
out what those purple dots likely were. On many pages it stated that
petechiae (broken blood vessels forming tiny dots under the skin) is the only
rash that is a medical emergency. Carter's spots did resemble those in the
pictures, but he only had a few, unlike the pictures showing head-to-toe
coverage. As the weekend went on and the spots remained we decided
to give the pediatrician a call on Monday, feeling OK that we waited based
on the fact that Carter was exhibiting no other signs of being ill. The call
prompted an appointment and the pediatrician immediately recognized the dots as
petechiae. However, from the minimal amount of spots, he assumed the
platelet count might come back around 60,000 - 80,000, and that it was likely
pediatric ITP (immune/idiopathic thrombocytopenic purpura) from which Carter
would bounce back from quickly. We were sent for a blood draw in the lab
downstairs, and told we'd either get the results the next day or after hours if
it was urgent. The day went on as normal with the precaution to make sure
Carter avoided major impacts/falls.<br />
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Around 8pm the doc on-call phoned. In a calm manner, she asked where Carter was
and how he was doing (he was peacefully sleeping in his crib) and then she
informed us that the platelet count came back at 5,000. We had read enough to
know this was critically low. Carter was happily asleep in his bed, so once we had
family on board to take care of his brother, we were off to the ER for a
hospital admittance and treatment with IVIG. There were talks of possible
leukemia. We experienced immense amounts of stress from being back at the
hospital we were discharged from just one year ago. We were now on the
hematology/oncology floor, sharing a room with a very sick little boy fighting
brain cancer. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">Carter responded to
the IVIG, and we were sent home with a platelet count of
73,000. Five days later the count was 90,000 and we thought we were
on the way up and in the clear; so did the docs. Four days after that
we noticed some spots (petechiae), and went for a blood draw that came back at
7,000. What? <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The story went
back and forth like this for most of the next 4+ months, as Carter was treated
with both prednisone and IVIG. Finally, in May, a remission was hit after
bottoming out with a platelet count of 1,000 around Mother's Day. Carter
has held strong with platelet counts ranging from 200,000 to 500,000 since (14
months). Fingers crossed and lots of prayers still being said. The
remission was finally hit after trying IVIG and prednisone combined, having
tried them separately with transient response. We/the docs considered
Rituximab, but we were skeptical/nervous and opted for a trial of IVIG and
prednisone first, and it worked (along with many prayers). <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The first two blood
draws when this all started in January 2011 revealed neutrophil counts of 300
and 1300. Carter had just overcome a cold, and the lower counts were thought to
be from fighting that. Other than doing a bone marrow biopsy to rule out
leukemia (ok 3 bone marrow biopsies — first sample was bad
(terrifying/devastating), second was for a better sample, and third was after
treatment wasn't working to make sure nothing was missed), not much attention
was given to the low neutrophil count...In fact they didn't even order it on a
handful of blood draws. However, as time went on
and Carter's neutrophil count remained in the low to extremely
low range, the docs' concern grew. The bone marrow biopsies both revealed
that Carter had 10 times the amount of "baby" neutrophils than the
average person. More blood tests revealed an antibody present to his
neutrophils, as well as one to his platelets. So, his body was essentially
tagging and destroying the neturophils and then working in overdrive to
make replacements.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">Coombs tests were run
twice, the first negative, the second positive. However, so far we have been
blessed to stay clear of hemolytic anemia.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">A diagnosis was given
after ruling out many other things and going for more blood work than one could
imagine a 15 month old could have gone through. We also took Carter for a
second opinion appointment at Children's Hospital of Detroit (Carter is seen at
the University of Michigan), and received two opinions from docs out of state
via phone and sending medical records. It took a few months to
unravel Carter's case, but Evans Syndrome is his
diagnosis. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">To keep a twin
baby-turning-toddler boy safe from falls, bumps, and bruises was extremely
challenging. He and his brother were just learning to stand and walk, and so up
went adhesive bumpers on all the corners of the house and furniture. The entire
first floor of our house has hardwood, so we covered that in those colorful
play mat tiles you can buy. More time was spent on walks and in
the pack-and-play to try to keep the bumps and bruises at a minimum.
Helmets were purchased to protect Carter's little head from falls,
especially when we played outside. And, we limited tumble time with his twin
brother as much as we could without restraining him from being the fun,
energetic little boy that he is.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">Carter became really
puffy from the prednisone and had petechiae and bruises from head to toe, as
well as a large hematoma on his arm (that we called 911 for when we were new to
all of this). It was extremely hard, to say the least. We did all we
possibly could to protect him and keep him safe. We thank God every day for the
remission we hit with the platelets, and pray the neutrophils will follow in
time.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The miracle about all
of this is that Carter is beaming with energy and other than the blood draws,
which he tolerates very well, he shows no other signs of being "sick.” He
runs, jumps, plays, and wrestles with his brother just as he should. We are now
on an every-other month blood-draw routine, which is fantastic compared to when we were
going multiple times a week.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">We know at almost 3
years old Carter's story has barely begun, but it has been so
eventful from the start. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">To cope with having
sick children is not easy, from a simple cold or virus to things much more
complicated such as extremely premature birth and Evans Syndrome. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">My mother has Lupus
and Rheumatoid Arthritis, and so do three of her cousins, as did her Grandmother.
I personally believe there is/can be a genetic link to autoimmune diseases,
even if not completely proven by science (yet). With that said, who knows
what the future holds. Obviously we hope and pray for a clean bill of health.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">When faced with the ITP
and neutropenia without it being leukemia or other suspects, the docs struggled
for answers. I took it upon myself to read medical journal articles, contacted
those who wrote ones that seemed relevant and found some wonderful, extremely
helpful docs out there. All I want is for my son to be OK and live a long,
healthy, happy life. I want to do all I can to help him because, although we
have found some wonderful doctors, there seems to be a kind of disconnect out
there in the medical world. Although I did not find it until Carter hit a
remission, The Evans Syndrome Community Network has made me feel so much less
alone. I kept saying to my husband and family when this was all happening that
Carter could not be groundbreaking medical information; there
had to be someone, somewhere who had or was going through this, too. I wanted
to go on the national news and find somebody! I did even better finding this
group.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;">May all who encounter
Evans Syndrome be blessed with long remissions and may we one day find a cure.</span><span style="font-family: Times New Roman;"><o:p></o:p></span></span><br />
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span>
<span style="font-size: 12pt; line-height: 115%;"><span style="background-color: #993333; color: #ffcc7f; font-family: Arial, Helvetica, sans-serif; font-size: xx-small; line-height: 12px;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-1489613446370983882012-07-21T14:20:00.002-05:002012-08-02T18:20:51.382-05:00Conner's Story<div class="p1">
<i><span style="font-family: Verdana, sans-serif;">contributed by <b>Amanda Ballesteros</b></span></i></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwjYxDvQp-gbLZnJTFBXdcrfDytHzWwHTBF4-V6pn2j2EUrwGC404mikHsBh-se0FMrgrH3Ibau9f5kfUK2xryirmBbyUTJQGYgs1tiE_aw8_u84fh8a4NeHPdEwGazb9JpXMsTKHklbL/s1600/Conner.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwjYxDvQp-gbLZnJTFBXdcrfDytHzWwHTBF4-V6pn2j2EUrwGC404mikHsBh-se0FMrgrH3Ibau9f5kfUK2xryirmBbyUTJQGYgs1tiE_aw8_u84fh8a4NeHPdEwGazb9JpXMsTKHklbL/s320/Conner.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><span style="font-family: Verdana, sans-serif;">Conner Ryan Lloyd 1999 - 2012</span></i></td></tr>
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<span style="font-family: Verdana, sans-serif;">I would like to share with others the story of my Angel, Conner Ryan Lloyd, in the hope of helping others struggling with Evans Syndrome, and to let them know they are not alone. </span></div>
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<span style="font-family: Verdana, sans-serif;">My son was born a healthy 8-pounds 9-ounces on September 12, 1999. He was a perfect baby and always happy. </span></div>
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<span style="font-family: Verdana, sans-serif;">In 2004, our lives changed forever. Conner started to develop bruises almost overnight. Some thought this was a case of abuse, and an investigation was opened. We ended up at Primary Children's Hospital in our hometown of Salt Lake City, Utah. </span></div>
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<span style="font-family: Verdana, sans-serif;">After undergoing blood tests, we discovered Conner had ITP. He was given an infusion of IVIg, and I thought everything was going to be OK. </span><br />
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<span style="font-family: Verdana, sans-serif;"><span class="Apple-tab-span"> </span>A few months went by. Conner developed a cough. I took him for a check up, and they found his hemoglobin (red blood) was low. We went straight to the hospital for additional testing. After the bone marrow biopsy came back negative for cancer, we were able to sigh relief. The blood test came back Coombs positive, and the disease rare: Evans Syndrome. </span></div>
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<span style="font-family: Verdana, sans-serif;">Conner was in and out of the hospital every couple of months for mostly minor low blood counts, and he always responded quickly with a treatment and prednisone. It was difficult for our family to adjust to hospital stays and treatments, but after a while we adjusted to the situation knowing it would be a chronic illness. </span></div>
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<span style="font-family: Verdana, sans-serif;">Eventually we decided to give rituximab a try. Conner went into remission for 8-9 months at a time! My son was actually able to live a normal, healthy boy's life. </span></div>
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<span style="font-family: Verdana, sans-serif;">In May 2012, Conner wasn't feeling well. Stomach pains, anemia, and fatigue. We were admitted into the hospital. After 11 blood transfusions, IVIG, 500 mg prednisone, Cellcept, rituximab, and a splenectomy, Conner lost his battle with Evans Syndrome. It was June 8th, 2012. His kidneys were very stressed and not able to release all the toxins from treatments, and his potassium count rose to a level that stopped his heart. </span></div>
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<span style="font-family: Verdana, sans-serif;">A parent never prepares themselves enough to lose a child. I honestly did not think Conner would have passed from this disease and its complications of treatment. I don't know if there was another underlying disease that he may have had, but the pain that Conner suffered is now over. May he rest in peace. </span></div>
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<span style="font-family: Verdana, sans-serif;">Conner wanted to be a doctor so he could help other kids going through a chronic illness. I believe sharing his story is a way of helping him achieve this goal. He is an amazing, brave, and dearly missed little boy. </span></div>
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<span style="font-family: Verdana, sans-serif;">As part of the Evans Syndrome Community Network, I have met some wonderful families in support of raising awareness and promoting research on autoimmune blood diseases including Evans Syndrome. I want to be a part of the support that families and individuals need when suffering from this illness. I want my son's name to always be remembered. Hopefully his story helps another. </span></div>
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<span style="font-family: Verdana, sans-serif;">Amanda Ballesteros</span></div>
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<span style="font-family: Verdana, sans-serif;">Mother of Conner Lloyd 09/12/1999-06/08/2012</span></div>
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<span style="background-color: #993333; color: #ffcc7f; font-family: Arial, Helvetica, sans-serif; font-size: xx-small; line-height: 12px;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com1tag:blogger.com,1999:blog-6046548021421666954.post-58224109634216470492012-07-11T04:08:00.001-05:002012-08-02T18:20:43.003-05:00Our Family Vacation<span style="font-family: Arial, Helvetica, sans-serif;"><i>contributed by <b>Janet Shull Shepherd</b></i></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaQa2H0NFE0IC9Fno_jyfGUM951ayOLu2n5XOUd6Gp1rl_kOuv5B0HcemURMdVyPnbvZmMiIy2mKIwbVY7fNweUWBAwbRnlDF-hcD5nxBTG5gX4RA-6DYPgB-vPp4wNoAZjM92A2rxrWIQ/s1600/from+Janet+Shull+Shepherd.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaQa2H0NFE0IC9Fno_jyfGUM951ayOLu2n5XOUd6Gp1rl_kOuv5B0HcemURMdVyPnbvZmMiIy2mKIwbVY7fNweUWBAwbRnlDF-hcD5nxBTG5gX4RA-6DYPgB-vPp4wNoAZjM92A2rxrWIQ/s320/from+Janet+Shull+Shepherd.jpg" width="320" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Our journey began four years ago when Brenna was 10 years old. She had a bad virus which resulted in hemolytic anemia. She was hospitalized, given blood transfusions and steroids. Doctors assured us that it was a freak thing, and that it would never happen again. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Fast forward--two years later...Brenna was 12 years old, Zach 16, and Jared 9. My husband and I took the kids to a beach for vacation that August. Brenna started to have bruises pop up, and purple dots on her legs, arms, and the inside of her mouth. She also started her first period, and was bleeding heavily. We took her to an urgent care clinic and they sent us for blood work. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The doctor called our rented condo and told us Brenna's platelets were 2,000, and her hemoglobin was 5. He told us to go to the nearest hospital, and that we would be transported two hours away to a children's hospital. I went into shock and started packing up our clothing for the trip. My husband drove us to the hospital. We went on to the children's hospital, and Bill went back to the condo to stay with the boys. We were about 11 hours from home, and I had no idea what was really happening with Brenna. I just knew it wasn't going to be good. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Once we arrived at the children's hospital, they started two IV lines to give Brenna blood, platelets, estrogen, steroids, and IVIg, plus some other things to try to stop the bleeding. She was hemorrhaging: It was more blood than I had ever seen. The doctors said she lost all of her blood volume. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">To make matters worse, my youngest son had a seizure that same night. He'd had one other seizure the year before. When my husband called and told me about Jared's seizure, I broke down. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My parents drove down and picked up the boys. Bill came to the hospital to be with Brenna and me. It was 6 days before Brenna was stable enough to make the trip home. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Brenna remained on steroids and was repeatedly hospitalized for IVIG and other treatments before she went into remission three months later. She missed 67 days of school that year. Our lives had become a living nightmare, and we have been riding a roller coaster ever since. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Brenna was diagnosed with Evans Syndrome and Lupus. She has chronic hives, chronic fatigue, and is frequently too dizzy to function. She has also developed depression and anxiety issues. She is very worried about starting high school this year, and missing days due to being sick. This is so overwhelming at times, and the worry and stress I have for her consumes me. I try to stay positive on the outside, but seeing my daughter suffer tears me up on the inside. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I keep all who are suffering with Evans Syndrome and Lupus in my prayers, and pray that there will someday be a cure for autoimmunity. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">To parents who are dealing with this: I think our strength just comes from God, as difficult as it is at times we have to be strong for our children. We can curl up and cry when we are alone, but when we are by our childrens' sides, by their beds, in hospitals, during doctors appointments, we have to be their advocates, their rocks! Stay strong--You're not alone!</span></div>
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<span style="background-color: #993333; color: #ffcc7f; font-size: xx-small; line-height: 12px;"><span style="font-family: Arial, Helvetica, sans-serif;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></span></div>
</div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-31308118484249631742012-07-02T15:15:00.001-05:002012-08-02T18:20:32.545-05:00My Story<i style="background-color: #993333; color: #ffcc7f; font-family: Arial, Helvetica, sans-serif; font-size: 15px; line-height: 20px;">contributed by <b>Kim Wright</b></i><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It was 2005. I had flu-like symptoms, was very lethargic, feeling sick. I also had a terrible headache. No matter what I did, I just couldn't get rid of the headache. After five days of laying in bed in agony, my mum said enough was enough, and called for my GP. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The doctor came to my home and tested my urine for possible pregnancy, but that was negative. My mum is an insulin-dependent diabetic, so the doctor also tested my blood sugar levels. This revealed I was slightly hypoglycemic but that was because I hadn't been eating for several days. After the tests, my doctor rang for an ambulance, as I was on the verge of losing consciousness. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At the hospital, I had more blood tests, and was placed in quarantine: Originally they suspected meningitis. They put me on 100 mg of prednisone folic acid, as well as a vitamin tablet. That's when I met my haematologist, Dr. Watson. He came out of semi retirement because I was a cause for concern. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Four days later, I was moved onto the hospital's blood ward, where I was told I had a condition called autoimmune haemalytic anemia. My haemoglobin had dropped to 2, which is what caused the headaches. I was given five units of blood. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I remember this as a very distressful time. I broke my ankle three weeks prior, so I was still recuperating from that when I was in the hospital. To this day, I suspect the trauma of breaking a limb triggered my Evans Syndrome. I was given morphine for pain, and my condition was downgraded, but when I tried to go to the bathroom by myself I collapsed. There was not enough blood to circulate through my body. The second time it happened, my heart had to be restarted. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After three units of blood, I started to feel a lot better, and was sent home after 9 days on 80 mg of prednisone. When I returned to Dr. Watson for my follow-up appointment, he told me that I had Evans Syndrome. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In June of 2006, my platelet count dropped dramatically. I bruised at the slightest touch, and my menstrual period was unusually heavy. Dr. Watson put me on a treatment called rituximab. Thankfully, I responded.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In November of that same year, I miraculously fell pregnant. The baby was due in August of the following year. However, not long into the pregnancy, I was told by a doctor that I should consider terminating my pregnancy: The effects of rituximab on the unborn were unknown, and my child could end up with disabilities. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I didn't even have to consider the possibilities: I would continue the pregnancy and give my child a chance. I gave birth to a perfect baby boy weighing 6 pounds 9 ounces, 6 days overdue, by c-section. We will celebrate his fifth birthday this year. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I have been on and off steroids now for 7 years. I have been given somewhere around 40 blood transfusions. Personally, I have found Azathioprine to be the best treatment for me. Currently, I'm on 200 mg daily, with no side effects. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I do suffer in other ways: I have irritable bowel syndrome, rheumatoid arthritis, and I battle with my weight because of the steroids. Sometimes I get very tired, but I'm still up-beat, and I don't let this get to me. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The main thing is that I'm alive. I don't worry about relapse, and I pray for treatment success…I don't think I would be human if I didn't. I fight…and I win. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In between all of these years, I contracted Legionnaires Disease. I was in intensive care, and was left with weakness in my left lung. I am now prone to chest infections, which lead to pneumonia. I always have back up antibiotics at home, as infections seem to be a main cause of allowing my platelets to drop. I've learned the signs, and I'm quick to react.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I owe Dr. Watson a great deal. He is not just my consultant: He and the members of his team are my friends. I can turn to them any time. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I am now 29 years old. I hope my story helps. Thank you for reading.</span><br />
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<span style="background-color: #993333; color: #ffcc7f; font-family: Arial, Helvetica, sans-serif; font-size: xx-small; line-height: 12px;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-31038361623309684642012-06-07T16:15:00.001-05:002012-06-07T18:50:35.304-05:00Regarding Natural and Holistic Approaches to Treatment of Evans Syndrome<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i>by <b>C. McNamara Romanowski</b></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Over and over we hear inquiries about natural approaches to treatment of Evans Syndrome. Our answer always has to be the same: Please check with your doctor before making any changes to your diet and/or medication. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">It would be nice if we could find a cure for Evans Syndrome in nature. And to be completely honest, a lot of the medicines we use today actually got their start in nature. Here are some interesting facts (from David T. Teachey, MD):</span><br />
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<ol>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Most modern drugs are originally from nature. For example, Rapamycin is a drug that is currently being investigated in clinical trials for treating children with Evans Syndrome. Rapamycin comes from a bacteria that lives on the shore of Easter Island (known as Rapa Nui to the natives—hence the name of the drug). </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Not all things from nature are good for you—arsenic, cyanide, and hemlock for example. These substances are poisonous…and they are found in nature. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">With alternative medicine, you don't really know what you are getting. There are no FDA regulations on alternative medicine approaches. Because of this, you could buy two (2) bottles of ginko from the same company, and one might have 100-times more ginko per pill than the other. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Herbal medicines can interact with other drugs. Check to make certain that there are no drug interactions before starting anything new (natural or prescribed by your doctor). </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Some herbal products that are advertised as recommended for Evans syndrome can cause bleeding, and are therefore a bad choice in someone with Evans Syndrome.</span></li>
</ol>
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Ultimately, the most important thing is to <b>talk to your doctor before starting anything</b>. <a href="http://drugs.com/">Drugs.com</a> is a great website to check for drug interactions and side effects.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Be proactive by double-checking information you get from your pharmacist. Stick with the same pharmacy all of the time: Your pharmacist knows what drugs you are taking and can make sure none of them will interfere with each other. Even talk with the pharmacist about non-prescription remedies, to make certain your prescriptions won’t be impaired by something over-the-counter.</span><br />
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for treatment of depression. There is no standard dose or regulation that
prevents a person from taking as much as desired. St. John’s Wort can cause an
increase in serotonin levels, leading to a condition known as serotonin
syndrome. Withdrawal symptoms can be extreme, and include excessive tremors,
hot flushes, increased anxiety, and restlessness. On top of that, St. John’s
Wort can interfere with prescription serotonin reuptake inhibitors such as
Zoloft, Prozac, and so on. In the US, St. John’s Wort is viewed as a benign
herb, however in the Republic of Ireland a prescription is needed for St. John’s
Wort. (http://en.wikipedia.org/wiki/St_John's_wort)</span><!--EndFragment-->
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Remember...you are your own best advocate, and the advocate of your children. It’s up to you to make sure you get the most appropriate care, are on the appropriate meds, and eating the appropriate diet for your circumstances and health.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-66107199262313098662012-06-07T13:40:00.001-05:002012-06-07T13:58:34.521-05:00Every Day Is a Gift<br />
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<i><span style="font-family: Arial, Helvetica, sans-serif;">Contributed by <b>C. McNamara Romanowski</b></span></i></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My name is Constance. I am 51 years old. Seven years ago, I
was diagnosed with Evans Syndrome.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">There were signs that I had a problem with my immune system
for many, many years, actually beginning around age 2 when I was first
diagnosed with a severe allergy to penicillin. Around age 7, I was diagnosed with eczema. At age 15 I was
placed on birth control pills to control crazy menstrual cycles. At 29, it was
Hashimoto’s thyroiditis. In my 30s, I developed numerous allergies to various
medications, primarily sulfas. Also, I started having problems with unexplained
pain throughout my body. Sometimes I wondered if I would see my 40<sup>th</sup>
birthday. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">When I made it to 40, I thought, “Wow, every day from here
on out is a gift!”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On my 44<sup>th</sup> birthday, I was diagnosed with Evans
Syndrome following a lengthy period of decline that culminated in a
hospitalization.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Treatment
consisted of blood transfusions, IVIg, and finally rituximab. Not so
very long after my last rituximab infusion, my blood counts skyrocketed to normal
but then I started having trouble breathing. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On my 45<sup>th</sup> birthday I was diagnosed with massive
pulmonary emboli in both lungs due to Factor V Leiden and a Lupus trait to hyper-coagulate.
Once my Evans had been brought under control, it gave the hyper-coagulation tendencies
in my body a chance to wreak havoc. My life was saved by a catheter into my
lungs, injecting strong anti-coagulants directly into the clots.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sometime during my 45<sup>th</sup> year, I was diagnosed
with fibromyalgia, and then Lupus. I have been lucky, though. So far, Lupus
doesn’t appear to have affected any of my organs.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Throughout this journey, I have sought information with
regard to what’s happening to my body. In particular, it was difficult to find
much information on Evans Syndrome. Because of that, my husband, William, and I
decided to start a network of people who shared this diagnosis. The Evans
Syndrome Community Network was born. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Speaking figuratively…We are from every continent; we are
every race; we are every age; we are every sex. We are the Evans Syndrome
Community, and we are united. We may be rare, but we are not alone. Together we
will make a difference, standing shoulder to shoulder.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I have been asked, “Who are your heroes?” </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I really have to
answer: "My heroes are my doctors and nurses and all of the other individuals
who have participated in my healthcare. My heroes also are all of the moms and
dads and grandparents and spouses out there who are caring for a person with
Evans Syndrome. My heroes are those who have Evans Syndrome and fight every day
to overcome its obstacles."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Today I am on blood thinners, and I am in remission from
Evans Syndrome. Every day is indeed a gift…every breath, a joy.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.comtag:blogger.com,1999:blog-6046548021421666954.post-86561524393159267692012-05-30T00:50:00.000-05:002012-06-07T14:06:36.410-05:00With All My Heart<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Contributed by <b>Joshua Rice</b></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Hello all. My name is Joshua. I’m a 34 yr old that has been battling Evans Syndrome.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My story begins back in 2005. I was working as a millwright in a foundry in Birmingham, Alabama, when I came down with my “problem”. It started like a stomach virus, so naturally I stayed out of work for a couple of days to rehydrate. When I didn’t get better, I decided to go to the Emergency Room for fluids.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">When the receptionist called me back for my insurance info, she asked me if my color was usually yellow. I turned yellow as a school bus right in front of her, so they rushed me back and immediately did a CBC, and told me they were keeping me. Over half my blood was gone, and they couldn’t find out why. My wife and I were horrified.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Later, I was moved to a private room and was told I might have bird flu. I was quarantined, and all they would do for me was give me Tylenol for the major temp I was running. While all this chaos was going on, my whole family was called in, and were given no answers.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I ended up staying the night before I was transported to University of Alabama Hospital in Birmingham. It was a Sunday. I don’t remember much but the ambulance ride that day.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Early Monday morning I woke up short of breath. The color of my skin was pale-grey. My blood had hemolyzed to the point I had very little left. My hematocrit (blood volume) was 5. I remember the nurses getting a little blood but before they made it to the lab it would coagulate. They pumped me full of steroids and gave me what they thought was the best match in blood. Needless to say it’s a miracle I’m here today to write this biography. During this time, I felt the Grace of God surrounding me: It was a tangible presence. The next morning, the nurse came in and told me it was good to see me still here. After 5 days of working to get me stable, I was sent home with a diagnosis of hemolytic anemia, not knowing that my life would be forever changed. What I didn’t realize was that hemolytic anemia is not exactly a diagnosis: It is a symptom of a deeper problem.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After a couple of weeks of taking mega doses of steroids, my counts stabilized and became normal. I went back to work. After a month, I was given the option to work in Ohio or quit, so I just quit. My boss at the time was worried I would sue him, I guess.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It wasn’t long after that I found another job here in our town, and for a year I was going strong—all was good. Then I started waking up with nosebleeds. I thought maybe it was just sinusitis. I stayed fatigued and worn out all the time.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Finally, I decided maybe I should see a doctor. He did a CBC that showed my counts were dropping again. Back on the steroids I went, and it helped…But my platelets wouldn’t come up past 70. I still had no definite diagnosis, so I started looking for another doctor.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My new doctor did a bone marrow biopsy but still gave me no diagnosis. I felt like I was just floating along waiting to die for four more years, until 2009, when the steroids completely quit working.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I found another doctor, and had to go through the process all over again. That meant another bone marrow biopsy. This guy told me I had myelofibrosis, a disorder with a prognosis of about 5 years. All I could think of was, “At least I know what I’m facing now.”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In 2009, I slept in the hospital more than I slept in my own bed, and all my doctor would do was pump me full of steroids and transfuse me. Nothing was working, so my family doctor advised me to go to the Mayo Clinic in Minnesota to see Dr. Ayalew Tefferi. I agreed, so my doctor gave me three pints of blood, and told me “Good luck.” To be honest, I didn’t expect to come back.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My wife and I arrived in Rochester, Minnesota, in February. It was COLD! My appointment was at 10am, and we were both anxious. We walked into the clinic and were amazed: The first thing that caught my eye was a grand piano surrounded by women in wheelchairs and wearing do-rags on there heads. They were chemo patients. The pianist started playing a familiar song—Amazing Grace. As I watched the faces of those ladies beam with Glory, tears flowed down my cheeks and hope arose in my spirit. I knew all would be OK. After my wife and I collected ourselves, we went on to my appointment.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We walked into the doctor’s office, and he asked my name and what was going on with me. I described my medical history, and he listened with a concerned look on his face. He told me to get some blood tests and to see him in two days.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The morning after a day of testing, we arrived in Dr. Tefferi’s office hoping to hear any kind of news. He sat me down and told me it wasn’t myelofibrosis at all. I had Evans Syndrome, or I was in the beginning stages of aplastic anemia. We were glad that I would live longer, but we weren’t out of the woods yet.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After our conversation with the doctor, we went out of that office happier than we had been in a long time. We walked across the street to have a smoke. I looked into the heavens and asked God, “What are you doing?” While walking back across the street a green ball of light the size of a volleyball began to dance at my feet, and I knew all would be OK.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">That year I was laid off from work and had to draw unemployment. During that time, my counts dropped once again, and I was infused with a bag of platelets. From that bag of platelets I contracted e coli. It found its way to my back and destroyed half of my L5-S1, and obliterated a disk. I was paralyzed for two months. I am currently disabled.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The point of my story is not to scare or depress anyone. I want to encourage you: Never give up. Never loose hope. There is a light at the end of your tunnel. I had every reason to give up and call it quits, but I didn’t. Many times I wanted to give up and I would…for a while. But then I would find the faith to get back up and fight, and Grace just never, never gave up.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I love you all, and pray that you find comfort and peace in knowing you are not alone.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">With all my heart,</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Joshua</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-10366271258672379932012-04-06T11:51:00.000-05:002012-06-07T13:58:53.099-05:00It's My Story...<i><span style="font-family: Arial, Helvetica, sans-serif;">Contributed by <b>Laura Thurman Shaffer</b></span></i><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As I was walking through the mall with my mom and daughter, I was thinking to myself, ‘How lucky I was to be buying baby clothes again!’</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I had wanted this baby for years, and I was finally showing!! I also just got over a scare: I had started bleeding, and they weren’t sure why. They did do an ultrasound and found a little tear in my uterus, so I was put on bed rest for a few weeks.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Earlier that day, I had cut my finger while working in the kitchen. I looked down at the cut, hours later, thinking it was funny that it was still bleeding. It bled so much when I first cut it that I ended up with blood all over the floor, as well as covering at least a dozen paper towels! My concern led me to stop in at my husband’s station to get it looked at, and I got laughed at! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Laura, its just a little scratch!” Nick said. He wouldn’t have thought so if he saw the mounds of paper towels and blood on my kitchen floor! Oh, well. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Back at my mom’s house a few hours later, I had to pee again—another fun perk of pregnancy! As I got up, there it was again…peach-tea urine. I called my mom in to see if I was crazy, and she thought that I needed to call my OB doctor. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Laura, that’s weird, plus you do not look right…Are you sure your going to be OK while I am in Florida?” she asked. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Moooooommmmmm…I’ll be just fine!” I said. To be safe, I called my OB and got an early-morning appointment.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">That next day, I went to my doctor appointment, and got to hear my little guy’s heartbeat! The doctor came in, took one look at me, pushed on my stomach (which was always hurting me), and said that I needed to get to the emergency room right away. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I called my husband, but I was not panicked. I told him to stay at work; that it was probably just so I could get checked out, and that I would be home later. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I sat there alone for hours on a hard bed in the triage unit of the OB floor. They came in for blood every hour. Finally, after 5 hours of waiting, a nurse came in and said a doctor would be in shortly to see me. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">That nurse did not tell me that a team of doctors was coming, but that’s what I got. I was shocked to see so many white coats standing beside the bed. They asked me all kinds of questions. Finally, one asked, “Mrs. Shaffer, have you ever had problems with your blood?” I shook my head, indicating that I had absolutely no history of blood-related problems, and then they told me they were admitting me to the hospital. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The next morning was a blur of specialists, and a statement that I will NEVER forget. “In Order To Save You, We May Have To Take Your Baby.” I was barely hitting 19 weeks: The baby would never survive delivery. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I thought, ‘After all that I had been through to get him, you want to take him away from me?? NO WAY.’</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">That day, to my surprise, my skin turned very yellow. Jaundice! They told me that billirubin would cross the placenta and cause problems. All day long, specialists provided me with more bad news, but not one could tell me what was wrong with me. It wasn’t HELLP (related to the very serious pregnancy complication of pre-eclampsia); although similar, some of the key symptoms were not there. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Finally, after a week in the hospital, a hematologist was able to stabilize my blood, and I went home on bed rest and monitoring. I visited my hematologists and my OB every few days, and I made it to 38 weeks…despite all the speculations of a premature birth. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I gave birth via a caesarean, which was a terrible experience for my OB! Then my hematologist diagnosed me with me Evan’s Syndrome. He seriously thought that maybe this was all pregnancy-related but my blood did not recover after birth. In fact, ITP and hemolytic anemia were getting worse. The steroids were no longer helping; blood transfusions were not helping; Iron Transfusions were not helping. Rituxan was my next step, however, the pain in my stomach was severe and the rapid growth of my spleen could no longer be ignored.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On June 3rd, 8 months after giving birth, my overly enlarged spleen was removed. I almost did not make it through the surgery. I had several blood transfusions and, if not for the patience of my surgeon and anesthesiologist, I would not be writing this today. Not only did the surgeon remove from my body a spleen the size of a newborn: He also took out an accessory spleen! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">One week and a drain tube later, I was released to go home. I still felt terrible and the pain on the opposite side of my stomach got worse. One very early morning when I got up to check on the baby, I nearly passed out. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I called my husband and he took me to the hospital. They did a CT scan, which not only showed that the drain tube crossed over my stomach, but that I had several more spleens. To this day, I still have pain where my spleens are, but they are not being monitored and we do not know if they are working. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A few weeks after surgery, I was told that my Evans Syndrome was in remission, and that maybe I never had it; They just couldn’t be sure.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Today is March 28, 2012. I still start to turn yellow. I get very pale, very tired, and my joints hurt. I stutter, and I have terrible headaches. My hands, arms, feet, and legs are always numb. I am not allowed to drive because its possible that I may be having mini seizures, and I have momentary memory loss. I feel swollen and bloated. But my blood is still in remission. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In November, I was hospitalized for a critically high level of ammonia in my blood. Still no one can tell me what’s wrong with me. I need someone to tell me. I want someone to tell me. I despair. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My life has completely changed: I feel weak and not in charge of myself anymore. I have no freedom, no career path, no money, and no insurance. Things have gone downhill so quickly. When I go to my hematologist I am made to feel like a hypochondriac, as if I can NOT be validated because my numbers are good. Luckily, my family doctor is listening: on April 11<sup>th</sup> I will see a rheumatologist. My family doc suspects that lupus may be creeping through my body. FINALLY…an answer. I am awaiting an MRI—because I am an American without insurance, it’s on hold.</span></div>
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<i style="line-height: 16px; white-space: pre-wrap;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small; font-style: normal;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></i></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-45975803252028565202012-04-02T15:09:00.001-05:002012-06-07T14:09:28.886-05:00Ella's Evans Syndrome Story<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Contributed by <b>Libby Gray</b></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">For the first two and a half years of her life, my daughter Ella Rain was healthy. She was my first child and watching her grow up has been an experience sad and thrilling and terrifying all at once. For the first two years of her life she a healthy, happy, beautiful, outgoing little baby girl.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">New Year’s of 2004, when Ella was 29 months old and I was pregnant with her little brother, we went to a friend’s house for dinner. My toddler ate nearly as much as my friend—a large man in his late 20s! That intense hunger was probably the first symptom we noticed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Over the next several days she began asking for cup after cup of water, and was going through more diapers than she had as a newborn. I contributed it to a urinary infection, or a growth spurt, or her being jealous of me and the baby. I took her to the doctor, who said she just had a yeast infection in her diaper area and gave me some steroid cream that did no good. My little girl was becoming different…she was whiney, tired, clingy and thirsty, thirsty, thirsty.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On February 9<sup>th</sup>, 2004, Ella woke up vomiting in the middle of the night. She cried incessantly, begging for water, drifting in and out of sleep and complaining her eyes hurt, her legs hurt, her head hurt. I tried to brush it off as just the flu, but my heart wouldn’t let me. I didn’t know what, but I knew it was something bigger. That afternoon, my husband got on the phone with the doctor who, in turn, told us to go straight to the hospital.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">To shorten this long story, it was on that day that Ella was diagnosed with Type One Diabetes, an autoimmune disorder in which the immune system destroys the insulin-producing cells of the pancreas. Her blood sugar was nearly seven times the normal level, her blood chemistry was messed up, she had lost 8 pounds in six weeks, and was less than 12 hours away from a diabetic coma. Suddenly we were thrust onto a steep learning curve of insulin injections, carbohydrate counting, and constant monitoring and vigor to balance a delicate hormone that could save a life or take it.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As time went on, diabetes became our “new normal”, and started to fade into the background of our everyday life. Ella was diagnosed with other autoimmune conditions over the next few years: Hashimoto’s hypothyroidism, severe allergies, and asthma. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">But our Evans story begins around December of 2008, when Ella was seven years old. At first I thought she might be getting sick, or in a growth spurt: She began experiencing relentless high blood sugars, having nosebleeds and being so weak and tired during the day she was taking napping more than her baby sister. Next came the bruises that covered her body as if she’d been in a fist fight, the cold and ear infection that never quite went away, and the way I noticed her working just a little harder to take each breath. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I was used to seeing a rainbow of colors from Ella: pink cheeks flushed from excitement and playing in the sun; ghost-like paleness from a low blood sugar; greens and browns of dirt and grass staining her knees from a hard day of play; marker, pencil, and paints of various shades covering her hands because her creative brain felt like making something. But this was not a good rainbow to spot: she appeared deathly grey, with dark circles under her eyes; covered in purple bruises; and the whites around her hazel eyes just slightly yellowed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Shortly after the New Year of 2009, Ella woke up with a 103F fever, blood in her urine and out her nose, and 450 blood sugar (her range is 80-150, and we rarely see numbers that high unless she’s very sick, we seriously miscounted carbs, or there is a problem with her insulin pump). She just looked like death warmed over. Completely terrified, we decided not to waste time at the pediatrician’s office, and I took her straight to the ER.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">They immediately started running blood work and found her hemoglobin and platelet counts to be severely low. She was admitted, given antibiotics and a blood transfusion, and the whirlwind of tests began to find out what was wrong.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I remember the first night: I sat by her bed and just sobbed. Why Ella? Why my family? She’s such a good girl and she’s already been through so much. Why can’t she just be left alone? The C-word was thrown around, but I refused to let it enter my mind. Lymphoma and leukemia—such big, horrifying diseases that just don’t happen to little girls who spend their time crafting, reading for pleasure, and doing cartwheels through the grass.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On January 10, 2009, after almost four days of testing on her urine, blood, and bone marrow, a direct Coombs test revealed the duel diagnosis of ITP and Autoimmune Hemolytic Anemia—Evans Syndrome. I asked my husband, who was at home with the other two kids and the computer, to Google this bizarre disease. He found nothing but horror stories and brief descriptions. I so wish we had found the Evans Syndrome Community Network (ESCN) at that time.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The pediatric hematologist explained the vicious attack her immune system was inflicting upon her body, and that the best way to stop it was a strong course of steroids to combat the attack. Steroids can make even a non-diabetic resistant to insulin, so her already-high blood sugars skyrocketed to five and six times the normal levels. I worried about the formation of dangerous ketones. Ketones are the by-product of high blood sugars as the body attempts to break down fat instead of glucose for energy. She was already sick and developing trace ketones. I didn’t want to risk DKA (diabetic ketoacidosis: a life-threatening level of ketones in which the blood is acidic and there is no way for the body to get energy from food.)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She was released from the hospital four days later, and for the next several weeks we walked a dangerous tightrope. The steroids stabilized her hemoglobin and platelets to around 10 and 30,000 respectively, but they sent her blood sugar soaring. I doubled, tripled, quadrupled her insulin dosages around the clock, but days were rare we saw a number under 200. In addition to the immediate risk of DKA, the paralyzing fear of future heart, eye, kidney, and limb damage from relentless highs kept me wide awake at night. As soon as we began tapering her off the steroids, her blood sugar would come down, but so would her hemoglobin and platelets. She ended up back in the hospital three times in two months from low platelets, low hemoglobin, or scarily high blood sugars with ketones.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">By March, we’d all grown frustrated beyond belief with the battle between diabetes and steroids and I longed to see my daughter well. It’d now been four months since she felt like a normal child—she was always tired, nauseous, thirsty, and dizzy from the high blood sugars or the Evans. We both cried a lot in that time. Our whole family was missing the spunky, creative, energetic little girl we’d known just a few months prior. I begged our hematologist for another option. He suggested IVIG.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In April, we began the monthly infusions. After some trial and error with working out the horrendous headaches she would get from them, she started to respond very well. Her platelets went up to 60,000; 80,000; even 110,000 and her hemoglobin climbed, too. While she didn’t particularly enjoy sitting for 5 hours in a doctor’s office every three weeks, we were all thrilled with the progress she was making. With the exception of our treatment days every few weeks, life was getting back to normal. Ella was getting back to normal.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On June 15<sup>th</sup>, exactly one week before her eighth birthday, we began seeing dramatic drops in Ella’s white blood cell counts. We knew it increased her risk of infection, so we tried our best to keep her isolated…but in a houseful of small, social, germy children that was nearly impossible. So began an uphill battle with chronic sinus and ear infections that would take two and sometimes three rounds of antibiotics to clear up before they would just return again. The infections also would drop her platelets and hemoglobin, trigger her asthma, cause roller coaster blood sugars, and make her just feel miserable. She went back on short courses of steroids, during which we struggled to control her blood sugar even more. I tried every method I knew to protect and clean her sinuses and ears to prevent these infections: Neti pot washes, saline spray, fresh juice, homeopathic ear drops, garlic oil. It helped some, but her weak immune system just couldn’t fight off these infections.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At the end of the summer, a nurse at our endocrinologist’s office recommended papaya leaf extract for low platelets, saying she knew a young leukemia patient who had great results with it for his platelets. A big fan of homeopathy, I ordered a bottle and gave it a shot. I gave her a large spoonful each morning on an empty stomach, and her platelets shot up just as well as any IVIG treatment. We used it for about four or five months and her platelets haven’t been below 80,000 since then, even after stopping the extract.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">While the papaya leaf extract stabilized her platelets, Ella still struggled with repeated infections, low WBCs and recurrent anemia. Her numbers would go up for about two weeks, then crash steadily in the remaining week or two before her next treatment. In October 2009, she was hospitalized for a week and a half for bronchitis, complicated by the Evans Syndrome, diabetes, and asthma. What a nightmare! In the prior months, we’d also had several overnight trips and 24 hour stays in the hospital to correct high or low blood sugars, ketones, and dehydration from stomach viruses and other infections.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We continued with steroid bursts, papaya leaf extract, IVIG, and round after round of antibiotics for the next year. She had a period of about two months in early 2010 when her numbers were very stable and treatment was working well; then her counts started to fall again.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In May of 2010, shortly before she turned 9, Ella had sinus surgery and ear tubes placed in an attempt to relieve the chronic infections. It didn’t get rid of them completely, but greatly cut down on the number of infections she got, and improved her quality of life. The IVIG kept her stable for another month, so much so that her hematologist wanted to begin lowering her dose. That didn’t work well at all. Her counts fell drastically, her symptoms returned, and it took another round of steroids (and super high blood sugars) to pull them to safe levels.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After a failed, vomit-filled trial of Cellcept in August and September, Ella began the drug Rituxan in October 2010.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">(Now might be the time to mention that in the midst of this chaos, we had a baby girl in August, and began fostering a four-year-old boy the week before Ella’s first Rituxan treatment. Instead of dragging all these kids with me to the hospital every two weeks, my husband graciously took Ella to all of her twice monthly infusions.)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Rituxan was a wonder drug for Ella. That, in addition to all our other measures, stabilized her counts drastically in a very short amount of time. For the first time in almost two years, she could play like a real little girl again—she could run outside with her siblings and not get tired. She could turn cartwheels and not be covered in bruises and blood. She wasn’t so sick anymore. She was Ella at last.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She took her last IVIG on December 10<sup>th</sup>, 2010, and her last Rituxan shortly after the New Year.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On February 9<sup>th</sup>, 2011—ironically the 7<sup>th</sup> anniversary of her type-one diagnosis—Ella was officially declared in remission and has remained there for just over a year. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I thought having a toddler with diabetes and a new baby was the hardest thing I ever went through. Little did I know I would deal with diabetes, Evans Syndrome, and five young children (now six—we adopted again in March 2012). </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Ella Rain is a trooper through all of it and the strongest person I know. On our journey with Evans, she cried, she got angry, and she got scared. But through all of it she found a way to be her quirky, outgoing, positive self, even when dealing with the worst of it all. She’s been recently diagnosed with Celiac Disease (January 2012) and is adjusting to a gluten-free life with grace. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-81585401244504520062012-03-28T14:47:00.001-05:002012-06-07T14:15:42.468-05:00Colby's Journey<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Contributed by <b>Amber Wakefield</b></i></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Our journey began in April of 2010, so we are “babies” on this trip! My son, Colby was in 7th grade--a normal 13-year-old who liked to play sports, was busy with his church, and was, overall, a great kid. He still is!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Colby started coming home from school with huge bruises on his arms or legs. To be honest, I thought he was being bullied at school, and somebody was hurting him. He kept on insisting that the bruises were from basketball or games in PE. Well, the mom’s intuition kept nagging in the back of my brain and time went on for a bit more, but I always felt as if something was wrong.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The next things we noticed were huge-looking hives, along with the bruises. Benadryl would make them go away for the duration of the medication but they would come right back. Finally, I took him to our family doctor, and he, thinking Colby was allergic to something, referred us to an allergist. So…to allergy testing we went: No allergies were revealed, so a blood test was written up. We went later that same day to have his blood drawn, and then headed home.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So began our entry into the world of a thing called Evans.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At 4:00 a.m. the next morning the allergist called to tell us Colby needed to go immediately to Children’s Mercy Hospital. My husband didn’t understand what the doctor was saying, so I took the phone. The doctor proceeded to tell me that Colby's platelet count was at 4 (or 4,000, as I would later come to learn). Too many numbers and not enough explanation; they are all still so confusing at times! The doctor also explained that if we didn't go, Colby could bleed to death. So we lay in bed and, of course, I cried: The immediate thought in my head was that it was cancer or leukemia of some sort.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We decided Colby was safe in bed, and so waited until his two older sisters were up for school and told them what little we knew. They were a little upset but headed off to school with lots of texts going back and forth. We got Colby up, and told him about the phone call. We explained that we needed to head to Children’s Mercy in downtown Kansas City.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As testing continued, I realized how blessed we are to have a Children’s hospital within 20 minutes of our home. I ran into many people that traveled for hours for their child’s treatment, or would have to use the wonderful downtown Ronald McDonald House facilities. I will never complain about traffic, or the drive, because we could always come home or have family come to us.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">By this time, I am a mess but trying to contain it for my son’s sake. I didn’t want him to worry or be afraid. They kept taking more blood, and finally put in a port. My prayers increased. They started off telling us Colby had ITP but more assumptions were to come. Cancer was on the list but pretty far down. The doctor-on-call saw my reaction to the work and, again, tried to reassure me that cancer probably wasn’t causing the anomalous blood counts.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Eventually they took Colby up to the hematology/oncology unit—no comfort at all. My heart ached for these parents and all they have had and will continue to endure. I still pray for those families and what must undergo. As a side note, my freshman daughter, who plays soccer, was participating in the annual Cancer Battler Cup against their rival high school. I had that T-shirt on and was still reminded of what could be.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Colby received two bags of platelets that evening but they were eaten up within 12 hours, his counts returning almost back to where he began. This gave the doctors the direction to lean to Evans and away from cancer. My husband, who never cries, broke down in tears. He had been in Colby’s room praying for him and was relieved as we all were!!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So now the Google searches began! We did exactly what they told us not to do because there wasn’t much (and still isn’t much) information out in cyberspace. We also found out his red and white counts were low but not too bad.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">They sent us home the next day with orders to come back later the following week for a bone marrow aspiration. We learned this was needed in order to confirm the “no cancer” diagnosis, since steroids are the first treatment generally given for Evans. With that test behind us, and again no cancer, Colby went on an horrendous regiment of steroids, to the tune of 300mg.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It is appalling what this drug (corticosteroids) does to the body!! Colby lost a part of himself during that time. My son who normally is loving, outgoing, and will laugh at anything, became withdrawn, depressed, and quiet. He hated it, I hated it, but most of all kids at school found something for them direct their stupidity towards. He started his 8<sup>th</sup> grade year, looking like somebody else and feeling abnormal. We almost pulled him out to home school but he wanted to keep on going and things eventually calmed down. His school was great and did whatever was needed to accommodate him.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Remission” lasted almost a year. Colby was and still is good about pointing out bruises or rashes. We went back in and blood work showed a big drop again so this time they did rituximab but without steroids!! Colby asked me in the car on our way home after finding out his counts had dropped, “Do I have a say in all of this?” I said, “of course.” This was the day he decided, never again on the steroids unless it is the only treatment!!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Four rounds rituximab of later, Colby has been in another “remission” for almost a year now!! His last set of blood work showed even more of a raise in platelets, red, and white cell counts. We don’t have to go back to the doctor for another 6 months, unless he shows signs of its return.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">All during this time, our church prayed and continues to pray for Colby. There is much comfort in knowing others are on this road with us, and that no matter what happens, the Lord will never leave us. The end result may not yield what we want, but the lessons learned will always be priceless.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Colby has given up the sports but has found a new passion with acting and singing. He found his voice in a new way and has a heart that is bigger than a mom could ever imagine. For that, I am grateful for this path called Evans.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com3tag:blogger.com,1999:blog-6046548021421666954.post-63820304404676084392012-03-25T13:56:00.001-05:002012-06-07T20:41:57.922-05:00Roller Coaster<i style="font-family: Arial, Helvetica, sans-serif;">Contributed by <b>Michael Borg</b></i><br />
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Our son, David, was discovered to have a low platelet count in April 2010, at which time he was hospitalized in nearby Brunswick, Georgia. He was 14 years old. He received a treatment of Intravenous Immunoglobulin (IVIg), and his platelets rebounded. At the time, they diagnosed David with idiopathic thrombocytopenic purpura (ITP). </span></div>
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Several weeks prior to his hospitalization, David began experiencing frequent nose bleeds, but we didn't notice any increased bruising. As it turns out, his primary indicator of low platelets is bleeding from the nose. Other people get a lot of bruising, too, but David just doesn't bruise much. </span></div>
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Due to a work relocation in August that same year, we moved to Purcellville, Virginia, a northwestern suburb of Washington, DC. After our move, David was hospitalized several times, usually with very low platelets. The lowest platelet count we recollect him having was around 1,000 (a normal platelet count is 100,000 or higher): He is usually between the 30,000 and 50,000 range. </span></div>
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When we moved to Virginia, David began seeing a hematologist at Children's National Medical Center's Children's Cancer and Blood Disease Center of Northern Virginia. This new hematologist positively diagnosed David with Evans Syndrome in February 2011. In March that same year, we got a second opinion from Dr. Bussel, at Cornell Medical Center in New York City. Dr. Bussel suggested removing David's spleen, however, we opted not to do that.<br />
On July 3, 2011, David had a severe nose bleed that lasted more than six hours. We were visiting family in New Jersey at the time, so we took him to Robert Wood Johnson Hospital. The hematologist there confirmed David's Evans Syndrome diagnosis. He received a dose of IVIG, and his platelets rebounded.</span></div>
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David responded well to IVIg treatment, but had another incident in October 2011. This time, his platelets didn't go up to an acceptable level, and both leukocytes (white blood cells) and platelets were being affected. He was treated with CellCept, responding well, but developed severe back pain, so he was taken off this drug in December 2011.</span></div>
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After CellCept, David's platelets were in the 50,000-60,000 range without any medication, and his white counts were elevated, as well. However, now in March 2012 we see that his platelets are again dropping. </span></div>
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David experiences extreme fatigue, pain, and weakness in his extremities to the point at which he is practically immobile. He has missed a lot of school this year…too much. He gets frequent headaches, and recently has been complaining of stomach pain. The doctors really don't have a lot of information to inform or comfort us. </span></div>
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The <a href="https://www.facebook.com/groups/EvansSyndromeCommunityNetwork/"><span class="s1">Evans Syndrome Community Network (ESCN) Facebook page</span></a> has been a blessing to us. Sharing the experiences and information has provided more intelligence for us to maneuver and manage through this. The doctors never told us to see a rheumatologist or an immunologist: It was ESCN's Founder, <a href="https://www.facebook.com/constance.mcnamara"><span class="s1">Constance McNamara Romanowski</span></a>, who did. While they provided no answers to David's ailments, at least we were able to check them off the list, and got a battery of tests done for the record.</span></div>
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Plotting a course through Evans Syndrome has been a very frustrating ordeal. As a parent with a sick child, you feel helpless when your son says, "Just find out what's wrong with me." The <a href="https://www.facebook.com/groups/EvansSyndromeCommunityNetwork/"><span class="s1">Evans Syndrome Community Network Facebook page</span></a> has been a comfort during this difficult trial. We appreciate all the people--sufferers, families, and parents--who are sharing in this trial. If we all keep sharing information, we will be able to deal with this in a more intelligent and prepared manner. Thanks to all of you for not shutting down, but opening up and sharing, so that we can inform each other and our healthcare providers ~ who may one day find the key that unlocks this mystery.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-8981262075041246842012-03-03T01:41:00.002-06:002012-08-02T18:19:07.910-05:00Rare Disease Day 2012<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>by <b>C. McNamara Romanowski</b></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The Evans Syndrome Community Network, headquarted in Des Moines, Iowa, joined the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29, focusing attention on the needs of patients and families affected by rare diseases.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“This [was] a global observance,” said Peter L. Saltonstall, president and CEO of NORD. Individuals and organizations around the world use the day each year to share with others their experiences and how rare diseases affect their lives.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The challenges of living with a rare disease include:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">• Difficulty getting a timely, accurate diagnosis</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">• Too little research</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">• Too few treatments</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">• Reimbursement or other issues affecting access to treatments</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">• A sense of isolation</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">• Difficulty finding medical experts</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In the United States, any disease affecting fewer than 200,000 Americans is considered to be rare. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease. In addition, only about 200 of the diseases classified as rare have approved treatments.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Rare Disease Day started in Europe in 2008. It was launched by EURORDIS (Rare Diseases Europe). Last year, it was observed in more than 60 countries, with a national sponsor in each country. NORD is the sponsor in the U.S.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (www.rarediseaseday.us). The Evans Syndrome Community Network is one of those partners.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The Evans Syndrome Community Network on Facebook is open to anyone diagnosed with Evans Syndrome (ES), as well as those whose lives have been touched by a person with ES. The organization hopes to provide a way of networking with other ES people, as well as good information, and mental and emotional support. Their motto is: "You can make a difference, standing shoulder to shoulder."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome is an uncommon condition defined by the combination (either concurrently or sequentially) of an attack on two or more lines of blood, including red blood cells (Autoimmune Hemolytic anemia), platelets (Ideopathic Thrombocytopenia or ITP), and white blood cells, also known as leukocytes. This occurs when the immune system mistakenly targets these cells for destruction, and the spleen subsequently destroys them. Autoimmune cytopenia can be a sign of systemic autoimmune disease, such as Lupus or other connective tissue disorder, and the patient should be tested appropriately. (Mikhail Shtivelband, MD, PhD, and http://www.ncbi.nlm.nih.gov/pubmed/16398647)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 was “Rare but strong together.”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Rare Disease Day activities in the U.S. included a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website; educational materials for classroom teachers; and a nationwide blitz of patient photos, stories, and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Several special events took place, including a scientific symposium at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA).</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Since many of these diseases are genetic, more than half of the people who have rare diseases are children” Saltonstall said. “The problems encountered by families are enormous. It’s important for these families to know they are not alone.”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">NORD was established in 1983. It provides advocacy, education, research and patient services on behalf of rare disease patients, families, and patient organizations.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-44284196979258582222012-03-02T08:18:00.033-06:002012-09-19T16:28:15.547-05:00Evans Syndrome in a Nutshell<div style="line-height: 16px; margin: 0px; padding: 0px; white-space: pre-wrap;">
<span style="font-family: Arial, Helvetica, sans-serif;"><i style="font-weight: normal;">by </i><i>C. McNamara Romanowski</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><i><b>DISCLAIMER: </b><span style="font-weight: normal;">This document is being written by a layperson who has Evans Syndrome, not a healthcare professional. The information presented herein is provided with the understanding that it is not "gospel", as it were, but a frank look at Evans Syndrome facts and statistics from a layperson's point of view. This information should never replace advice given to you by your doctor or other healthcare professional. </span></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome is an uncommon condition defined by the combination (either concurrently or sequentially) of an attack on two or more lines of blood, including red blood cells (Autoimmune Hemolytic anemia), platelets (Ideopathic Thrombocytopenia or ITP), and white blood cells, also known as leukocytes. This occurs when the immune system mistakenly targets these cells for destruction, and the spleen subsequently destroys them. Autoimmune cytopenia can be a sign of systemic autoimmune disease, such as Lupus or other connective tissue disorder, and the patient should be tested appropriately. (Mikhail Shtivelband, MD, PhD, and </span><a href="http://www.ncbi.nlm.nih.gov/pubmed/16398647" style="font-family: Arial, Helvetica, sans-serif;">http://www.ncbi.nlm.nih.gov/pubmed/16398647</a><span style="font-family: Arial, Helvetica, sans-serif;">) </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">A common misconception that we see in the general public seems to be: "If it's not cancer, then it must not be serious." It's true that Evans Syndrome is not cancer: It is not true that Evans Syndrome is not serious. Evans Syndrome is very serious. A report in the Journal of Pediatric Hematology/Oncology showed that Evans Syndrome has an approximately 7% mortality rate after 3 years. (</span><a href="http://journals.lww.com/jpho-online/pages/articleviewer.aspx?year=1997&issue=09000&article=00005&type=abstract" style="font-family: Arial, Helvetica, sans-serif;">http://journals.lww.com/jpho-online/pages/articleviewer.aspx?year=1997&issue=09000&article=00005&type=abstract</a><span style="font-family: Arial, Helvetica, sans-serif;">) This study was published in 1997, and treatment has changed since then, so the mortality rate may not be quite as high today; however it is the only solid statistic with regard to mortality that can be provided in the text you are currently reading. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In order to obtain a diagnosis of Evans Syndrome (ES), certain other health problems must first be eliminated. For example, the symptoms of ES are very similar in nature to leukemia and lymphoma. As a result, both leukemia and lymphoma must be ruled out prior to a diagnosis of ES. A bone marrow biopsy is done to closely examine the body's mechanism for blood cell creation. A battery of blood tests reveals that there is no other reason for the low blood counts, as well as the presence of antibodies that are targeting healthy blood cells for destruction (Coombs test). </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">While awaiting diagnosis, blood transfusions may be given, as well as Intravenous Immunoglobulin (IVIg), which coats the blood cells, protecting them from destruction; and IV steroids, which slows down the immune system, helping to shut down the mechanism that is destroying the blood cells. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Once a diagnosis of Evans Syndrome is obtained, aggressive therapy is undertaken in order to shut down the immune system reaction to the blood cells. Most frequently this is done with very large doses of corticosteroids such as Prednisone or Decadron. Evans Syndrome does tend to be refractory to treatment, in which case additional medications may be used, including but not limited to certain chimeric monoclonal antibody treatments (Remicade, Rituxan, etc.), and anti-rejection drugs (Imuran, Cellcept, Cyclosporine, etc.). </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">If a person with ES still does not respond to treatment, or should they continue to experience refractory episodes, splenectomy (removal of the spleen) may be considered. This is an invasive procedure that leaves the person without all of the body's natural defenses to infection. Because of this, a person without a spleen is wise to take extra precautions to prevent infection or exposure to illness throughout the rest of their life. Unfortunately, splenectomy is not always successful, sometimes requiring further treatment with the aforementioned drugs even after removal of the spleen. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">There are cases where no amount of drug treatment or surgical intervention helps, and the doctors may then recommend a bone marrow transplant. This is a very dangerous procedure, as the person must be given a battery of drugs to kill off their immune system, and then receive bone marrow stem cells from a donor. Marrow transplants for cancer can be done with autologous cells (taken from the person who is also to receive the transplant), however it is the understanding of this author that this is not the best choice for a person with Evans Syndrome.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome has no cure. Today, the best that can be hoped for is lifetime remission. ES is considered to be an "orphaned" disease, as almost no research has been done. The reason for this is that there are so few people with ES that it is not fiscally responsible for drug companies to do research into a treatment or cure. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We are the Evans Syndrome Community Network, a non-profit organization serving those who are affected by ES. Our mission is to provide a safe place for networking between individuals whose lives have been impacted by Evans Syndrome (ES); to make available scientific and educational material, online and in medical environments, fostering learning about ES among our Community and the general public. We will assist families affected by ES with travel, lodging, and medical expenses; collaborate with other organizations that share our vision, and fund autoimmune research to benefit our international Community. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">Should you need to contact us directly, for any reason, please <a href="mailto:ESCN@me.com" target="_blank">drop us an email</a>.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Thank you for asking about Evans Syndrome. Together we will make a difference, standing shoulder to shoulder. </span><br />
<i><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></i></div>
Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-33291900561290598462012-01-31T11:44:00.007-06:002012-06-07T14:24:42.133-05:00Our Journey through Evans Syndrome<div class="MsoNormal">
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Contributed by </i><b><i>Nicole Gofman</i></b></span></div>
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<i><span style="font-family: Arial, Helvetica, sans-serif;">Mom of Zachary, Age 8</span></i></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Zachary was diagnosed with Evans Syndrome at the age of 5, after a 17-day stay at the Children’s Hospital of Philadelphia. Our journey started on the Fourth of July weekend while visiting family. Zachary had an infection on his leg and suddenly spiked a fever; when we brought him to the emergency department we were told that his white cell count was zero. We were admitted, and Zack underwent blood tests, cultures, MRIs, and a bone-marrow aspiration: All the while, as parents, we felt so helpless; scared; angry that we couldn’t do anything to make him better.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The doctors told us that Zachary has an auto-immune disease—either Autoimmune Lymphoproliferative Syndrome (ALPS) or Evans Syndrome. We were relieved that they had finally determined what was going on.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“Don’t Google them,” is what our hematologists said: Of course that’s the first thing we did. Not much information was out there about either disease, and what did turn up was scary.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Zack was treated with a combination of IVIG and steroids, and put on Nupogen. Finally his counts returned to normal. We were sent home to return to the out-patient clinic.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Since that Fourth of July weekend Zack has had problems with his white cells, red cells, and platelets. He has been on Sirolimus and Cellcept;. He’s had a Rituxan treatment, numerous hospitalizations, and more IVIG infusions than I can conveniently count. He has had bouts of autoimmunity evident in his brain and, most recently, his GI tract. We still haven’t found the “right” medicine for him, so he has been on steroids, of varying dosage, for the past 16 months. One thing is for sure, this disease sucks.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Even through all of this Zack is a well adjusted, happy child; he enjoys karate, video games, and Pokémon. I only hope that one day we will have the answers we need to manage Evans. In the mean time, we will enjoy all the healthy times, and cherish our moments of fun. We will nurse him and love him through the bouts of bad. Because that is what being an Evans parent is all about.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>
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</div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-84731986456385595432012-01-27T17:04:00.002-06:002012-06-07T15:14:31.341-05:00Solving a Mystery<div class="MsoNormal">
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Contributed by <b>Carole Cascia</b></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I remember the phone call that started it all. My 21-year-old son, Colin, had been living in Philly for about six months. Though I had met his girlfriend a few times, she had never called me. The next four words changed our lives forever:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">“I’m worried about Colin.”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She spilled out a story that would make any mother panic. According to Jess, Colin had been exhibiting some strange symptoms. I knew that he had developed pneumonia and pink eye since he moved down to Philly from our home in Connecticut, but I attributed that to not eating right and burning the candle at both ends, as many young people do: Nothing strange there. But what Jess was telling me now was a lot harder to explain or write off. Colin was always tired and was having such intense night sweats that the sheets would be soaked in the morning. His skin color looked funny—something between yellow and grey; and he had lost a lot of weight.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I was not yet in nursing school, but had read enough to know that these were classic cancer symptoms.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I told her to sit tight and that I would be down there this weekend. Immediately, I called Colin and told him that I was going to visit him. Then I booked a hotel and called my partner at work, telling her that we would be going to Philly that weekend. I also called our family practitioner and made an appointment for Colin for early the following week.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After checking into the hotel, I called Colin. It was 1:00pm: He was still in bed. I thought that this was odd, as he was an early-bird. We arranged to meet at the subway stop near our hotel at 2:30pm.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">If Jess’ phone call had alarmed me, the sight of my son scared me witless. I saw him come up from the subway station, and immediately grabbed my partner’s arm and said, “My God, he’s got cancer.” Aside from the weight loss, he was quite pale, and was moving like an old man. His hair looked like it was thinning. It was absolutely shocking.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We spent the next 24 hours asking him about other symptoms. He was always tired; he had a hard time thinking straight; and he was pretty sure that he had fevers once in a while. Then I noticed the patches. His shirt was opened a bit and I saw the petechiae: Tiny red dots on the skin of his chest and neck. I knew that this was a sign of leukemia.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I didn’t want to alarm my son, but I told him that he would be coming home with us, and that we would then go straight to the doctor’s office. He complained that he really thought I was overreacting, and that he was probably just run down. Of course, I would hear nothing of it. He insisted that he had something that needed to be taken care of on Monday, so I made him promise that he would leave Monday afternoon. He finally agreed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Colin insisted on going into the doctor’s office on his own. When he came out, he reported that the doctor had told him to go to the ER. He was not sure why.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I requested to talk with the doctor. She came out, and explained that she had done a pinprick test to check Colin’s RBC. A normal count for a male should be a 4.7- 6.1, when she checked Colin his was a 2. She told me that they were waiting for him at the ER.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Colin seemed undaunted by this information: He was still thinking that he was a little anemic, but I did not feel so confident.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">If I had not been sure that something was wrong before we entered the ER, I was sure once we checked in. There was no waiting. Colin was immediately whisked via wheel chair to a private room. There they took a blood test and the jovial doctor went quiet and serious when he saw the results. Colin’s red blood cells and white blood cells were all abnormally low as were his platelets. Not just on the low side, but life-threateningly low. I could hardly breathe, and now Colin was starting to worry. Within minutes there was a team of oncologists surrounding his bed, quick-firing questions: Had he been exposed to any chemicals; had he ever been tested for HIV; had he been out of the country… None of this was making any sense to either one of us, and when the doctor’s finally left us alone for a minute Colin looked at me and shakily asked me if he had cancer. I couldn’t answer his question.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The head oncologist pulled me aside, and said that he suspected that Colin had leukemia. In order to confirm or discount this diagnosis he would need to take do a bone marrow test. Of course we agreed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Over the next few weeks Colin had many tests but instead of answering our questions, it just seemed to lead to more questions. After leukemia was ruled out, the doctors thought Colin had ITP, but then why the low white and red blood counts? None of it seemed to make sense, but we did know that nothing was working. They tried transfusions and steroids, but still his counts were perilously low. They might climb for a bit, but they always crashed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A diagnosis was finally confirmed after a positive Coombs test. Colin had Evans Syndrome. Of course, this was not something that anyone was familiar with, even Colin’s doctors. When I went home to try to find some more information, all I could find was a brief description of this strange disorder.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The next year was a haze of doctors’ visits and endless hospitalizations. Nothing seemed to get this damned Syndrome under control for any length of time, and my poor child was sinking into a depression as life went on and he was stuck either at home convalescing, or in the hospital. It was finally recommended that Colin have a splenectomy. It might put him into remission, and his spleen was very swollen and could rupture. It would be safer to remove it. It was a dangerous move, as his white blood count was still very low. He had a private room, but despite the best precautions, he ended up with endless complications after the surgery including: pneumonia; pleural effusions; and staph. To make matters worse, the splenectomy did not bring his counts up.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At times it seemed like he would never get out of the hospital and live a normal life.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After doing some research, I saw that Rituximab had been used successfully in the treatment of Evans Syndrome. The research was new, and certainly not overwhelming, but we needed to try something!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We went in for his first round of Rituximab, and I remember looking at all of the other patients in the room where they were getting chemo. I realized that my son looked sicker than any of them, even though he was, by far, the youngest person in the room. It was, again, a moment that I don’t wish on any mother. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After three rounds of Rituximab all of Colin’s counts went up to normal. We held our breaths each week when we went in for his blood test; but each week they were holding steady.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Finally the doctor said what Colin had been waiting to hear—“You can go back to Philly, and resume your life!”</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We are one of the lucky families. Colin has been in remission for six years. He continues to get his blood tested by a hematologist in Philadelphia, but he is living a full and normal life.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As time goes on we worry less and less, but until there is a definitive cure or treatment for Evans Syndrome, we will never feel completely comfortable.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>
</div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-68977431654170882632011-08-26T09:40:00.004-05:002012-06-07T14:27:50.083-05:00A fish rotton in Nevada...<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>by <b>Palemoon Twilight</b></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So...This is what I know to be true: My husband had a heart attack in January 2011. The doc put in 6 stents, and put him on Plavix. A person from 1-775-829-8885 called us at the behest of United Health Care. They wanted to ship us a scale to my husband and have him report back to them daily with his weight and information about his daily diet and habits. This would be done via wireless connection using a fancy scale that sends covert messages to its owners. Once the Alere operatives have my husband's information, I am assuming they, in turn, would report it to United Health Care.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Of course, the person on the phone says they are United Health Care with no mention of Alere, because they are contracting with United Health Care. This would be like me working as a temp for Smith Associates. The company that actually writes my check is Kelly Services...but when I'm on assignment at Smith Associates and I have to answer the phone, I say Smith Associates, not Kelly Services: I am being paid to represent Smith Associates when I answer the phone.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">United Health Care, and other insurance companies, are exploiting a loophole in US HIPPAA Law. Since they are paying the company who, in turn, is paying the Alere employee, the Alere person and United Health Care are within the letter of the law. Personally, though, you didn't authorize this other company to participate in your health care...hence said loophole.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">There is a little niggling inside my head that tells me that nothing is free. United Health Care does not have my husband's nor my own best interest at heart. They are looking for ways to save money, thereby increasing their profits. After all...Insurance is strictly a numbers game, and their odds are more favorable if they can get you to participate in a wellness program....because your health could improve because of it. Is this a win/win, or do the odds actually always favor the house</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Now, let me remind you that all of us have caps on our lifetime insurance benefits. How are insurance companies paying for this? Is it out of their operating budget? Or is it applied to our insurance cap? At any rate, I can guarantee that they are the true beneficiaries of such an investment. Still...although your insurance company will benefit, does that mean you should say "No" to their offer? It is a quandary; a question difficult to answer. Is it a case of the enemy of my enemy is my friend? Or is it a case of blind man's bluff?</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Instinct and common sense tell me that my husband can weigh himself without the help of Alere or United Healthcare. His doctor can and, in fact, is obligated to discuss his rehabilitation since the heart attack. The bottom line is that United Health Care hired this company to benefit United Health Care. Period.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Say you were home from work, sick. Your room-mate is fine, and is headed for work. Just before he goes out the door, you say, "Hey, on your way home, could you pick up some orange juice, please?" Roomie says, "Sure, no problem," then goes on his way. Now, around 3pm, there is a knock on your door. You answer in your bathrobe, only to find a Girl Scout standing there holding a bag from the corner sushi market. She says, "Hi, I'm your room-mate. You said you wanted me to bring you something to eat, so here it is." She hands you the bag, filled with California roll, edemame, and green tea ice-cream. But this Girl Scout doesn't look like your room mate. She actually reminds you a little bit of your sister's kid. As you take the bag from her, the Girl Scout says, "Oh, wait. I need to know your date of birth and driver's license number. Gotta be sure I got the right person." Do you give her the information? She doesn't look suspicious, but why does she need that info? What happens to the record with your DL # and date of birth? How secure are her records? Does she answer to the Federal Government as a provider of sushi? And who paid for that sushi, because obviously fish don't grow on trees. O.o</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It worries me that we are headed back to the 1980s when so many insurance companies required patients to go through a gate-keeper to see a specialist, and said gate-keepers were getting bonuses based upon the lack of referrals to specialists. Do yourself a favor: Manage your *own* health care. You know your body best.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Just my two cents worth.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com0tag:blogger.com,1999:blog-6046548021421666954.post-71577273276763943532011-06-13T22:08:00.003-05:002012-06-07T14:31:01.932-05:00ESCN Newsletter - June 2011<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>Note from the editor: Most of the news is plucked from the ESCN Group on Facebook. I strongly recommend you join us there, if you haven't yet. Just follow <a href="http://www.facebook.com/home.php?sk=group_41398368071"><span class="s1">THIS LINK</span></a>.</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><i>A Note from Constance</i></b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> In 2005, when I was first diagnosed with Evans Syndrome (ES), I had no idea of what the road ahead would contain. All I knew was that I was sick, alone and far from home, and that there was very little information available for me to find out more about this thing called Evans Syndrome.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> In the years since that first diagnosis, I have been able to participate in numerous fundraising and consciousness raising efforts for organizations like the American Red Cross and the National Marrow Donor Program. I organized a network of volunteers for projects in and amongst the disabled community of Phoenix, Arizona, and I started the International support organization known as the Evans Syndrome Community Network (ESCN).</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> ESCN is a non-profit organization committed to the sharing of information related to Evans Syndrome, as well as to promoting active research into treatments and a cure. We are interested not only in ES, but in all autoimmune illnesses that plague the world of mankind.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Some people feel that the use of a word like "plague" is a bit heavy handed, and that autoimmune illnesses are not nearly so pervasive. The truth, however, is a little more difficult to swallow. Some autoimmune illnesses have become household words, including (but not limited to) Type 1 diabetes mellitus, MS, rheumatoid arthritis, and vitiligo. The immune system can attack any part of the body, including the ears, the kidneys, the muscles…even the skin.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Our organization is currently in its infancy. We need your help. We're not asking for money. What we need are hands, mouths, and minds. If you would like to help by writing an article for our blog, or if you would like to take an even more active role by reaching out to health care professionals or media in and around your area, please let us know. You can do this by writing to us at the <a href="mailto:escn@mac.com"><span class="s1">Evans Syndrome Community Network</span></a>. If you are too busy or too ill to get involved at this level, but still want to help by donating money…stop! We are not taking donations at this time. That said, though, if you are still bent on giving out of your pocketbook, please visit the philanthropic site for the Johns Hopkins Medical Institute Autoimmune Disease Research Center. Their donation page can be found <a href="http://autoimmune.pathology.jhmi.edu/giving.cfm"><span class="s1">HERE</span></a>.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Thank you for all you do on behalf of children and adults with Evans Syndrome all over the world. Together we can make a difference.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><i>Kick-off Survey</i></b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> We have put together a survey which is to be the first in a series of surveys in order to explore our demographics and experiences. We may find some surprising similarities or even clues as to the cause(s) of ES. We have been told that ES is acquired…In other words: You're not born with it and it is not genetic.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> We want to know more. For example: What kind of treatment worked for you…Where did you grow up…At what facilities have you been treated…and so on. We have so many questions!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> This first survey just asks very basic information. Please take a couple of minutes to help by answering our questions. The survey is located <a href="http://www.surveymonkey.com/s/C7NMKMM"><span class="s1">HERE</span></a>.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> If you have ideas about questions you would like to see asked on further surveys, please email them to the <a href="mailto:ESCN@mac.com"><span class="s1">Evans Syndrome Community Network</span></a>.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><i>Happenings around the Globe</i></b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Our members are beginning to reach out to those around them in order to raise awareness of Evans Syndrome.</span></div>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">A family in the UK organized a group to walk in the Wirral Coastal Walk to raise funds to benefit Evans Syndrome research, in memory of their daughter (<a href="http://www.wirralnews.co.uk/wirral-news/local-wirral-news/2011/05/03/wirral-coastal-walk-family-and-friends-walking-to-remember-bride-to-be-who-died-six-weeks-before-her-wedding-80491-28627992/"><span class="s1">Click HERE for link</span></a>).</span></li>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">A Florida family hosted a fund-raising car show to help pay for a child's treatment (<a href="http://www.facebook.com/photo.php?fbid=10150110136682124&set=o.41398368071&type=1&ref=nf"><span class="s1">Click HERE for link</span></a>).</span></li>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">To raise money for a local children's hospital, a talented young woman in Australia is selling music CDs containing her own recordings (<a href="http://animoto.com/play/jZHS3AsQiVLtJIE4HXGXGQ?utm_content=main_link"><span class="s1">Click HERE for link</span></a>).</span></li>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">A man in the US created an online video series documenting his own personal struggle with Evans Syndrome (<a href="http://passionwind.com/saga2010"><span class="s1">Click HERE for link</span></a>).</span></li>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">In December 2010, Samantha K. began a topic that continues to glean information from our group into 2011. She asks: Has anyone been through two rounds of Rituxin? Not doses but two rounds of actual 4 dose therapy?</span></li>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">This alert went out in December 2010, but not wanting to overlook its importance, we are reposting it here: Were you or your child ever treated with levofloxacin (Levaquin) or ciprofloxacin (Cipro)? We have found information that clearly shows these two drugs can be related to triggering Evans Syndrome!</span></li>
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<li class="li1"><span style="font-family: Arial, Helvetica, sans-serif;">In January, we began this discussion: What dietary changes have you made [since Evans Syndrome entered your life]?</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;"> We have some helpful discussions going on with regard to the different warning signs and symptoms we see with Evans Syndrome, such as jaundice; petechiae; bruising; bleeding from the nose, lips, and mouth; enlarged spleen; and a secondary, or tertiary, autoimmune illness.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><i>Talk Topics</i></b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> We certainly are a talkative bunch. Covered here are some of the topics that have been active these first six months of 2011. Please visit our Facebook page to add your comments to the conversations:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> We have several ongoing discussions related to splenetomy and role the spleen plays in Evans Syndrome, as well as a broad range of other treatment options, including IVIg; steroids; Promacta; danazol; cyclosporine; azathioprine; cyclophosphamide; vincristine; Remicade; Rituxin; acupuncture; and bone marrow transplant.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> ...and just in case there is any question, we were summarily told that Vincristine is yucky.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Another important alert: We are discovering a significant connection between Evans Syndrome and two hypercoagulation problems: Factor V Leiden (genetic) and antiphospholipid syndrome (acquired autoimmunity). I urge you to be tested for these two problems, as either one of them could lead to clotting issues up to and including pulmonary embolism. We have discovered several individuals who have encountered problems with clotting after their Evans Syndrome comes under control, and each time they have had one or both of these conditions. Get tested now so that you don't have to worry about a clotting problem later.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><i>At Last...</i></b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> I would like to offer a word of encouragement. We have so much pressure, so much difficulty that we deal with in our lives, and each of us needs some encouragement each and every day. Some days are better than others. Celebrate the little victories, and make the day yours.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Peace.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com3tag:blogger.com,1999:blog-6046548021421666954.post-39225827004425136592011-01-25T19:21:00.004-06:002012-08-02T18:17:19.906-05:00What is this thing called Evans Syndrome?<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>by <b>C. McNamara Romanowski</b></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome...Most people have never heard of it. Most health practitioners don't even know what it is.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome is a combination of autoimmune hemolytic anemia and idiopathic thrombocytopenia. What does this mean? It certainly doesn't mean you need to take iron. It doesn't mean you need a "cleanse". It's not something that can be cured with magnets or homeopathy.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome may rear its ugly head at any time during a person's life. The mean, or average age of diagnosis of Evans Syndrome is 7.7 years.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Evans Syndrome is a perfect storm, when the body's own immune system targets the red blood cells and platelets as organisms foreign to the body, and then the spleen destroys them. People with active Evans Syndrome have trouble clotting blood, causing a tendency to bruise and bleed. The skin on the hands and arms, feet and legs, and torso may reveal tiny, pinprick-sized red or purple dots called petechia, which are formed by little hemorrhages under the skin.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Another thing that happens is destruction of the hemoglobin, the protein in red blood cells that gives them the red color. It is this part of the cell that carries oxygen to the rest of the body. A person with active Evans Syndrome may experience tissue breakdown or even congestive heart failure.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After reading the above paragraphs, you may wonder why the spleen isn't just removed, thereby taking away the destructive factor. Well, the body is an amazing and wonderful thing, and it can often find alternative means of protecting itself. Hence, removal of the spleen is only permanently effective in 30-70% of cases (depending upon which study is examined); and then the patient is left without one of the body's main defenses. Our spleen is not like our appendix. We actually need the spleen: It is used to fight infection in the body.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Usual course of treatment to combat Evans Syndrome includes intravenous immunoglobulin (IVIG) and a long course of very strong steroids. IVIG is only a short-term solution because it is extremely expensive and it does not produce remission. IVIG works by making blood cells slippery, and, in a way, fooling the immune system into ignoring them. IVIG is very expensive expensive because it is a blood by-product that requires the donations of anywhere from 5,000 to 30,000 people.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At some point in most the lives of most people, small doses of steroids are given to treat things like allergies or back pain. Steroids are superb anti-inflammatories. There is a problem, though: Steroids are what may be called a "sweet poison". The benefits, especially of long-term treatment, must be weighed with the detriments. Steroids are immediately addictive. Not only that, but they can cause a host of other problems including, but not limited to: Cushing's syndrome; diabetes; osteoporosis; cataracts; glaucoma; kidney failure; thinning of the skin; morbid weight gain; and immunodeficiency. This last side-effect is why steroids are useful in the treatment of Evans Syndrome: They effectively shut down the mechanism that is being used by the body to attack the blood cells. Eventually, though, the steroids must be tapered and then stopped. At this point the body either begins the attack anew, or the person goes into remission.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The next line of treatment can involve the use of any number of drugs, including full-blown IV chemotherapy. Sometimes chemo drugs such as imuran may be helpful, and there are a couple of newer drugs that encourage the production of platelets, also serving as a deterrent. That said, however, there is no real "magic bullet".</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Many hematologists turn to Rituxan, a sort-of genetic therapy which is manufactured from the ovaries of genetically-altered Chinese hamsters. Who thought of this? I have absolutely no idea. Rituxan was first used to treat leukemia, and later lymphoma. Since the symptoms of these cancers are similar to the symptoms of Evans Syndrome, it was decided to try the treatment on a patient with Evans. Because of its effectiveness in treating Evans, Rituxan has also been used to treat other autoimmune illnesses, such as Lupus SLE and rheumatoid arthritis.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Rituxan is usually given in 4 doses over a 5-week period. There are almost no side effects except those which may occur during infusion: Because of this, precautions for anaphylactic shock should be taken while the treatment is being administered. Rituixn has about a 70% rate of response in children, and about 50% in adults. Results may start to be seen anywhere from 2-6 weeks after the last infusion. If Rituxan doesn't work, there is no sense in trying it again...But if it does, it is should be given consideration should the person relapse.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">If all of these drugs are tried, and still the patient is not responsive, removal of the spleen (splenectomy) is probably indicated. Some medical professionals use this as the first course of treatment, however, it is felt in other circles that non-invasive treatments should be tried prior to invasive treatments like surgery.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The final course of treatment available to people with Evans Syndrome is a bone marrow transplant. This is the last choice because of both pre and post-transplant complications which may occur. First, the person must undergo a scourge of drug therapies in order to kill the bone marrow and shut down the immune response. Next, new cells are introduced, sort of "resetting" the body's marrow-producing capabilities. Sometimes these cells can be gleaned from the patient's own marrow: Other times donor cells are used.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">If, at any time, the body stops attacking the blood cells, this is referred to as "remission". There is no real cure for Evans Syndrome.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">How do I know this? I am not a doctor or a nurse. I do not work in a lab, and I don't have a degree in biology. I was diagnosed with Evans Syndrome at the age of 44. I have been in remission for 5 years, following a 5-week round of Rituxan. I first started showing signs of a problem around the age of 2.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sometimes I feel like there's a dark cloud following me around, waiting to once again unleash that "perfect storm". But for the must part, I am just grateful to be alive.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">For further information and support, register with the <a href="http://www.facebook.com/group.php?gid=41398368071"><span class="s1">Evans Syndrome Community Network</span></a> on Facebook, or with the <a href="http://groups.yahoo.com/group/Evans_Syndrome/"><span class="s1">Evans Syndrome Group</span></a> on Yahoo.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com2tag:blogger.com,1999:blog-6046548021421666954.post-35172776025280365592010-08-15T14:59:00.117-05:002012-08-02T18:17:05.221-05:00It Has A Name...<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif;"><i>written by </i><b><i>C. McNamara Romanowski</i></b></span></div>
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<img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRoKotqEf4BAD9iXIKrXPiGgDNyor415LNehv0bq7Gi6FPaw6KE_2o1VxGKIbDgE06QQEAnALeG9YPpxAOFj001IBa9IN3gyYxKrDky4Lq2QG-u4VTVi8drglL_qNlT1SWLENQUpllb5ry/s200/Constance+aka+Palemoon+Twilight.bmp" style="font-family: Arial, Helvetica, sans-serif;" width="200" /></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It was late December 2004. I was new to the city of Phoenix, Arizona...transplanted from a much smaller Midwestern city about 1600 miles away. I waved at the departing train carrying my son, Doug, back from whence I'd come, feeling a little nervous, anxious, but ready for the changes I faced. My family, my friends...just about everyone I knew was far away from me now. I thought I was ready for this. I couldn't have been more wrong.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As I crossed the expanse of desert and reservation between the train station and the city, I let my mind wander. I thought of Doug, 21 years old, headed back "home". Where was home? Now, home for me was a small apartment in a south-Phoenix suburb. I lived there with a yellow Labrador retriever named Troi, a shaggy, long-haired cat called Shorty, and a white-footed ferret who answered to Job (like the man in the Bible who lost everything so that God could prove a point to Satan).</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Looking for change, less stress in my work environment, and broader career opportunities, I had come to Phoenix via voluntary job transfer. Being single, I had no one to depend upon except myself. At one time, I was married to Doug's father, but that hadn't worked out and I found myself raising him on my own. He was more than old enough now for me to make this move, I thought. My parents, both living, were only two hours away from where he attended school. They were elderly, and in relatively good health. My mother encouraged the move when I first took it under consideration.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My eyes drifted from the highway, across the desert. I watched a dust-devil pick up debris, sucking it up and around, up and around...small bits of inconsequential flotsam being guided sightlessly across the floor of the desert by a tiny tornado.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I navigated that desert road safely back to work, never realizing that I, too, was being sucked into something over which I had no control.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">***</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Weeks passed. I felt tired, achy. I noticed that sometimes I seemed to run out of breath where before I felt robust. I attributed it to the drier air of the desert.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">With February, came news. My mother, who had been told that she had beaten breast cancer, was told that her cancer had returned. She would have to undergo further treatments...perhaps surgery.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It was frustrating being so far away. There was little I could do except offer kind words and prayers. I am an only child, so my parents had no other children to help them. They did find assistance through their church, which was an enormous comfort since I was unable to be there myself.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I moved through time as if I were not quite present. I was in Phoenix, but my heart was back in the cornfields of the Midwest. I talked with my manager about the possibility of doing my job from one of their Midwest locations. She told me this couldn't be considered until after I'd held the post for a year.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">March. Spring break approached. I asked for time off work so that I could relax. Doug and I planned to do some marathon Internet gaming sessions, chasing down over-saturated monsters in imaginary forests and plains.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Leaving work that Friday, I felt happy. I always enjoyed playing online games...Besides, this would give me an opportunity to spend hours in conversation with my son. We are big talkers in my family. I stepped off the curb in the parking lot, and something in my ankle just gave way. I found myself unable to bear weight on my right leg.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Wonderful.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In the Emergency Room, the doctor determined I had badly sprained my ankle, and put me in a partial cast. I was sent home on crutches with instructions that I was not to attempt bearing weight on that side for at least a week. After the week passed, I could remove the cast, and then would need to keep my foot elevated to avoid swelling and aid in healing.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I felt completely frustrated. How was I going to take Troi for walks? How was I going to get groceries, or even my mail?</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I did manage...and I enjoyed my virtual, long-distance, exotic getaway of games with Doug.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Upon my return to work that next Monday, I should have felt rested, but the tired, achy feeling that had become so familiar was still with me. I did as I was supposed to, beginning to bear weight on my ankle, keeping my foot elevated, eating my veggies. It made no difference. I felt like I was in a whirlpool of swirling water, being sucked ever downward toward an unseen drain.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">From time to time, over the years, I suffered tummy trouble that would leave me sitting on the porcelain throne, sweaty and quivering. It struck me once again about a month after my sprained ankle...with one glaring difference: There was blood in my stool. This was not just a tiny amount of blood, mind you. This was copious amounts of bright-red blood.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I called my doctor, with whom I had just become established because of my recent relocation. There were no appointments available. The receptionist recommended I visit a walk-in clinic. I found one near where I lived and worked. After waiting for what seemed like an hour but was probably more like two, the doctor listened to my stomach with a stethoscope and said I had the stomach flu. I told him about the blood, and he didn't even blink. Anti-biotics were prescribed, and I was sent home.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A week later, April 29, I went back to work. I felt pretty guilty about missing another week of work so soon after my spring-break holiday. I was still weak and "under the weather", but I wanted my boss and co-workers to know that I cared about my job, and I didn't want to let them down. A few people remarked that I didn't look like I felt very good.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Around mid-morning, I noticed tiny, red dots appearing on the inside of my wrists. They were very small, about the size of a pore. 'Perhaps an allergy,' I thought. It wouldn't be the first time. But there was no itching, and it didn't look like any rash I'd had before.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Again, I called my doctor. This time, the receptionist told me that I could be seen that afternoon, at 3:15. I arranged to leave the office a little early, and made it to the doctor's office in time for my appointment. I remember being very, very tired. I didn't even want to sit up when the doctor entered the exam room.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We began to discuss what had been going on with me. She looked at my speckled wrists, and said, "I'd like you to go and get some blood drawn, and I want you to have a chest x-ray."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Looking at her watch, she realized how late in the day on Friday it was. "Actually," she said, "I want you to go to the Emergency Room. This can't wait over the weekend. Go there now, and tell them you need a chest x-ray and a CBC."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The doctor repeated these instructions, and sent me on my way.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I went home, took Troi out for her afternoon constitutional, then headed to the hospital Emergency Room. This was the same ER I had visited just a month before when I sprained my ankle.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The intake aid didn't seem to feel I was in the right place. "Aren't you supposed to go to a lab?" she asked.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I explained that my doctor didn't want to wait for the results and that I had been instructed to go to the ER. Blood pressure was taken, temperature noted, and I was asked to have a seat in the waiting area.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I generally have low blood pressure, around 90/60. At this point, I should have known something was wrong because the aid said my BP was normal (i.e. 120/80). I have often had the suspicion that aids who take my BP sometimes just say it's normal because it's difficult to get a reading on a person with a low, quiet blood pressure. You will see why this is significant later...</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Several hours passed. I entertained myself with a cellphone game until my battery gave out. After that, I just watched the people come and go, realizing that I had been shuffled to the back of the line because it didn't seem like my problem was so acute that I couldn't wait.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Around 10 pm I was finally ushered back into the area of the building where patients were being seen. The examining rooms were full, so I was placed on a gurney in the hallway.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A large, jolly-looking physician's assistant came to talk with me. He looked at my wrists, and then asked if I had the speckles on my feet. I didn't know, so I removed my shoes.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My feet and ankles were covered in tiny, red dots. I asked the guy what he thought they were. He smiled and said we were going to find out.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I was taken for a chest x-ray. A woman drew my blood. Time passed. Some time after I was returned to my perch on the gurney, I watched a family down the hall react as they were informed of the death of a loved one. It made me feel like a voyeur, despising whoever made the decision to have me placed in the hallway.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Finally near midnight, a very serious young doctor came to me and asked, "How long have you been anemic?"</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"I was first told I had anemia when I was a child, around age 8," I said.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Has anyone ever talked to you about your platelets?" he asked.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Once, when I was 28, some pre-op blood work showed an abnormality. When I asked about it, the nurse told me not to worry about it." I started to feel a little panicky. Platelets?</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Well, your hemoglobin is 8," he said. The lowest I had known it to be prior to this was 10. "You're going to need a transfusion."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Shock.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"OK."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Fear.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Your platelets are 6."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I know I had a look of confusion on my face. I didn't know what a good platelet count was. The doctor took my cue.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Your count should be 100 or higher."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Mind-numbing terror.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I knew enough to know that platelets are what clot your blood, and if you don't have any you bleed to death.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"We're going to need to run some tests. I want you on bed-rest, except to go to the bathroom. If you're very careful, you can get up to use the bathroom. A slight bump could be catastrophic."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I tried to bargain with him so that I could go home. I didn't want to stay in this place. I didn't want to sleep in their bed and eat their food. I didn't want needles in me and people prodding me. I didn't want any of this. I felt myself screaming...on the inside.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">He would have none of it. I was going to stay.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">***</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A couple of hours later I was settled into my room in the hospital. The nurse announced my blood pressure was 60/50. She said this was because of anemia. (Remember that 120/80 from earlier in the evening?) An IV was installed, blood was ordered, aspirin given. I guess they dose you with aspirin before a transfusion because some people receiving blood develop certain issues.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Though my time in Phoenix had been short, I had become well-acquainted with one of my neighbors, Connie, who was also from the Midwest. I telephoned her from my bedside, and asked her to take care of my animals during my absence. She quickly agreed, and assured me that they were in good hands.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A nurse sat with me throughout the entire transfusion of two units of whole blood. He said that he was there to monitor my body's reaction to the introduction of fluids and foreign substances.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This fella was a tall, muscular, Native American man with long, black hair. I don't remember his name. We talked a bit. I remember him telling me that he was a "floater" who worked the Phoenix area for three weeks, then returned to his home on the reservation for a week. Rinse, repeat.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I drowsed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Could this really be happening to me?</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The little dots on my wrists and feet were called "petechiae" (pronounced puh-teek-ee-yuh). They were a definitive sign that I had a low platelet count. Think of them as tiny hemorrhages just under the surface of the skin.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At least that mystery was solved. But what was wrong with me?</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">***</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In the morning, a doctor came in to see how I was doing. He said that I was going to have multiple workups to determine the cause of my condition. When I asked him what this could be, he was careful in his wording and broke it down for me.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I heard, "...leukemia...lymphoma..."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">More fear.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">***</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After days of poking, prodding, and general discomfort, all kinds of tests...even a bone marrow biopsy...I was introduced to my new hematologist, Dr. Mikhail Shtivelband. It was May 3, 2005. In just a few days I would turn 44.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Dr. Shtivelband was a slender man of middle years, gentle in spirit, dark of hair and eye. He spoke with a distinctly Russian accent.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Your direct antiglobulin Coombs test is positive. You have idiopathic thrombocytopenic purpura. This is idiopathic because we do not know its source. It is unexplained. This is responsible for your drop in platelet count." He continued, "You also have autoimmune hemolytic anemia. These two things usually occur separately. but can occur together. When they occur together, we call them Evans Syndrome."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Dr. Shtivelband explained to me that most of the time Evans Syndrome presented in childhood. He said it is usually accompanied by another autoimmune condition, such as rheumatoid arthritis. He explained what my first line of treatment would be: IV steroids and IVIg. I had absolutely no idea what IVIg was.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"This is a blood derivative that will essentially coat your blood cells in order to fool your body so that the cells are not destroyed. It is only temporary."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">More blood products. Great.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"IVIg is difficult to obtain in large quantities, but we should be able to have it here to administer by tomorrow afternoon," he continued. "We will also administer IV steroids because it has the effect of shutting down the immune response in the body."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Well, that doesn't sound so bad, I thought. Not so bad...</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As it turns out, IVIg is the acronym for Intravenous Immunoglobulin, derived from human blood donations. It takes a portion of the blood from over 1,000 donors to make up just one bottle of IVIg. Its effect lasts between two weeks and three months, and the cost is well over $10,000 US. At the time of this writing, I found data that showed the cost of IVIg to be on the rise...expensive little bottle of life.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">***</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Steroids were started right away. IVIg was added the following afternoon. The nurse told me that we were lucky to get it.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Lucky.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I spoke on the phone with my son, my parents, my boyfriend, William. They were all so far away. I was spending my time in the desert...40 days and 40 nights of exile in the heat, baking in the white-hot sun of self-examination.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"It has a name," I told William. "It's called Evans Syndrome."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This was only the beginning.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.</span></div>Evans Syndrome Community Networkhttp://www.blogger.com/profile/13532880275628499441noreply@blogger.com1