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.

What is this thing called Evans Syndrome?

by C. McNamara Romanowski

Evans Syndrome...Most people have never heard of it. Most health practitioners don't even know what it is.

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.

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.

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.

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.

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.

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.

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.

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".

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.

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.

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.

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.

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.

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.

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.

For further information and support, register with the Evans Syndrome Community Network on Facebook, or with the Evans Syndrome Group on Yahoo.

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