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I understand your frustration. I had contacted the NIH about my son in 2000, 2002 and 2004 in the hopes of getting him him evaluated for ALPS - no luck I had given up. Then in 2006 we consulted with an immunologist and she was aware that the scope of the NIH ALPS study had changed somewhat and referred my son. It turned out that he did not have ALPS but those tests revealed the t-cell defect that they are now studying.
I would keep checking the NIH website periodically and just email the coordinators for the different studies you think your son might qualify for. Maybe something will come up that is a good fit.
Susan A.
In a message dated 3/8/2008 8:09:17 A.M. Eastern Standard Time, andicipa@... writes:
Unfortunately, my dealings with NIH were not as positive... they have
NO study available for Evans Syndrome. At separate times, my son had
no recordable platelets and a hemoglobin of 4.5. The only study they
have were for people who had chronic ITP. I have contacted my
congressman and senator about this, and I have never received a
response. Our local blood bank and university medical centers do not
have any studies either. I wish you well with the NIH... I hope you
son gets the medical care that makes him well.
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