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EvansSyndrome · The Evans Syndrome mailing list is for the purpose of sharing information and support to those individuals who have or know som
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Update on my son   Message List  
Reply | Forward Message #5019 of 5554 |
Re: Update on my son

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.




Sat Mar 8, 2008 1:08 pm

stillermom
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Message #5019 of 5554 |
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I'm glad to see people posting to the list again. I have been meaning to send an update on my son for some time now, but never seemed to get to it. When I last...
SAnder823@...
sander823
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Mar 8, 2008
1:03 am

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...
stillermom
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Mar 8, 2008
1:08 pm

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...
SAnder823@...
sander823
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Mar 10, 2008
2:54 am

Susan & Group, My son now 20 , was diagnosed with Evans at 12. We have had many ups and downs over the years and last year were told he had cancer and then...
bettanmic@...
bettanmic
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Mar 11, 2008
2:26 pm

Dear All, Betty is right - this auto immune ride is a roller coaster! But, thankfully Amy is correct too! There is so much more information and progress for...
Marlene M Pritchard
opca@...
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Mar 11, 2008
2:55 pm
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