Roller Coaster

Contributed by Michael Borg

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). 

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. 

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. 

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.
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.

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.

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. 

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. 

The Evans Syndrome Community Network (ESCN) Facebook page 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, Constance McNamara Romanowski, 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.

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 Evans Syndrome Community Network Facebook page 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.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

Rare Disease Day 2012

by C. McNamara Romanowski

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.

“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.

The challenges of living with a rare disease include:

• Difficulty getting a timely, accurate diagnosis

• Too little research

• Too few treatments

• Reimbursement or other issues affecting access to treatments

• A sense of isolation

• Difficulty finding medical experts

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.

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.

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.

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.

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."

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)

Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 was “Rare but strong together.”

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.

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).

“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.”

NORD was established in 1983. It provides advocacy, education, research and patient services on behalf of rare disease patients, families, and patient organizations.

Evans Syndrome in a Nutshell

by C. McNamara Romanowski
DISCLAIMER: 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.  
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)

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. (http://journals.lww.com/jpho-online/pages/articleviewer.aspx?year=1997&issue=09000&article=00005&type=abstract) 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.

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).

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.

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.). 

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. 

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.

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.

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.

Should you need to contact us directly, for any reason, please drop us an email.
Thank you for asking about Evans Syndrome. Together we will make a difference, standing shoulder to shoulder.
Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

Our Journey through Evans Syndrome

Contributed by Nicole Gofman

Mom of Zachary, Age 8

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.

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.

“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.

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.

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.

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.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

Solving a Mystery

Contributed by Carole Cascia

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:

“I’m worried about Colin.”

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.

I was not yet in nursing school, but had read enough to know that these were classic cancer symptoms.

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.

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.

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.

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.

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.

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.

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.

Colin seemed undaunted by this information: He was still thinking that he was a little anemic, but I did not feel so confident.

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.

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.

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.

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.

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.

At times it seemed like he would never get out of the hospital and live a normal life.

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!

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. 

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.

Finally the doctor said what Colin had been waiting to hear—“You  can go back to Philly, and resume your life!”

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.

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.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

A fish rotton in Nevada...

by Palemoon Twilight

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.

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.

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.

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

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?

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.

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

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.

Just my two cents worth.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

ESCN Newsletter - June 2011

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 THIS LINK.

A Note from Constance

    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.

    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).

    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.

    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.

    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 Evans Syndrome Community Network. 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 HERE.

    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.

Kick-off Survey

    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.

    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!

    This first survey just asks very basic information. Please take a couple of minutes to help by answering our questions. The survey is located HERE.

    If you have ideas about questions you would like to see asked on further surveys, please email them to the Evans Syndrome Community Network.

Happenings around the Globe

    Our members are beginning to reach out to those around them in order to raise awareness of Evans Syndrome.

• 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 (Click HERE for link).

• A Florida family hosted a fund-raising car show to help pay for a child's treatment (Click HERE for link).

• To raise money for a local children's hospital, a talented young woman in Australia is selling music CDs containing her own recordings (Click HERE for link).

• A man in the US created an online video series documenting his own personal struggle with Evans Syndrome (Click HERE for link).

• 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?

• 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!

• In January, we began this discussion: What dietary changes have you made [since Evans Syndrome entered your life]?

    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.

Talk Topics

    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:

    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.

    ...and just in case there is any question, we were summarily told that Vincristine is yucky.

    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.

At Last...

    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.

    Peace.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.