From: Amy Walsh <smlybly@...>
Subject: [EvansSyndrome] interesting topic
To: evanssyndrome@yahoogroups.com
Date: Wednesday, September 3, 2008, 7:57 PM

Hi all, The group has been quiet lately.  I hope everyone is doing well.  Aidan is doing really well.  His bone marrow transplant was over one year ago, it is amazing how fast that year went by and how great he is doing now compared to then.   My husband and I attended a dinner yesterday in the Chicago area for the immune deficiency foundation.  The physician who was speaking at the dinner was a rhuematologist/ immunologist from Seattle.  The title of his talk was "The immune system: Primary Immune Deficiency Diseases and Autoimmunity"  I wish I had a copy of his entire talk to share with all of you.  He really broke down the immune system in a way everyone could understand.  Throughout his talk, the audience was asking questions about both PIDD and Autoimmune disease.  The doctor stated that he would definitely be suspicious of PIDD in an autoimmune disease patient who has frequent infections or who has more than one autoimmune disease.  When asked if a patient came to him with a history of Evans syndrome and no or limited history of infections would he test for PIDD?  The doctor said Evans is a "special autoimmune disease"  he said they have found that it is most likely that all Evans patients have something else going on in the immune system whether they present with infections or not and that, in his opinion, yes, all Evans patients should absolutely have their immune system tested for primary immune deficiency disease.   Of course, I thought the topic was very interesting and wanted to share with all of you.   Amy Mom to Aidan 7 years with a history of PIDD and Evans syndrome (BMT in 2007)