Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 Hello Folks - we are forming a new group - " _Autoimmune-edu _ (mailto:Autoimmune-edu ) " - Driven by my own developments - Many of us suffer autoimmune complications which are not understood, and therefore treatments are also very haphazard - Since medical science does not comprehend the reasons behind an autoimmune complication (your body attacking its own red cells, white cells, or platelets), this is an area which is nearly virginal - Anything we can come up with can potentially be of use to the medical community, and the shared information will, of course, be useful to ourselves. - To subscribe, send an e-mail to: _autoimmune-edu-subscribe@ groups.com_ (mailto:autoimmune-edu-subscribe ) - See you there... Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 , Thank you for starting this group. Aside from my CLL/SLL diagnosis, I have had a history of hemolosis and auto immune hemolytic anemia (AIHA) which we somewhat stabilized with prednisone and cyclosporine. A few months later that all morphed into pure red cell apalsia (PRCA).I was Transfusion dependant.Then a little Rituxin. We ( the royal " We " ) are planning for a bone marrow transplant. My last BMB showed that I now have Myelodysplastic Syndrome (MDS).I have two abnormal chromosomes which may have been caused from my early chemo and that may explain my auto-immune complications. However,the good news is that now I am making my own red cells (not great one).Go figure. I have not needed a transfusion for over a month.I am holding my own. My palms are pink! I read all the listserves and look for the ones that deal with Auto-immune and have found that I skip through many of them searching for the ones that apply. We are a special breed. I know I have my doctors scratching their heads. I want to thank you again. It doesn't get any better than now. Life is good! New specialized group Hello Folks - we are forming a new group - " _Autoimmune-edu _ (mailto:Autoimmune-edu ) " - Driven by my own developments - Many of us suffer autoimmune complications which are not understood, and therefore treatments are also very haphazard - Since medical science does not comprehend the reasons behind an autoimmune complication (your body attacking its own red cells, white cells, or platelets), this is an area which is nearly virginal - Anything we can come up with can potentially be of use to the medical community, and the shared information will, of course, be useful to ourselves. - To subscribe, send an e-mail to: _autoimmune-edu-subscribe@ groups.com_ (mailto:autoimmune-edu-subscribe ) - See you there... Balan Quote Link to comment Share on other sites More sharing options...
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