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Update on my son   Message List  
Reply | Forward Message #5031 of 5561 |
Re: [EvansSyndrome] Update on my son

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 ten days later no and in fact the lymph node was the same as one tested 10 years previous. I believe the onset came from having two vaccines within a six week period.
Not to say he wasn't preset since there are others in the family with autoimmune issues. It has been a roller coaster ride currently he is on no medication and has only had ONE IVIG treatment in the last yea, a far cry from every two weeks. 
    
    While we enjoying this calm period we are always aware things can change.  My positive thoughts to all of us and I pray for better times for all.
 
 
    Betty Mom to Paul 20 Evans+  
 
 





Tue Mar 11, 2008 2:26 pm

bettanmic
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Message #5031 of 5561 |
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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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