Monday, June 13, 2011

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.

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