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interesting topic   Message List  
Reply | Forward Message #5125 of 5552 |
Re: [EvansSyndrome] interesting topic

 
Hi Amy,
 
Thanks for the update. It is wonderful to hear how well Aidan is doing. Who was the doctor that spoke? I definitely need to look into meetings here in the NJ area.
 
I posted some info on research the NIH is doing on Evan's patients with immune deficiencies in an another email regarding lung testing. All the new interest in this area is extremely encouraging!
 
Susan
 
In a message dated 9/3/2008 7:57:51 P.M. Eastern Daylight Time, smlybly@... writes:

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)    

 





Sat Sep 6, 2008 9:44 am

sander823
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Message #5125 of 5552 |
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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...
Amy Walsh
smlybly
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Sep 3, 2008
11:57 pm

interesting...thank you for sharing Erin Amy Walsh <smlybly@...> wrote: Hi all, The group has been quiet lately. I hope everyone is doing well. Aidan...
Erin Healey
eheals27
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Sep 4, 2008
1:10 am

Hi Amy. I would have loved to have been there. I really need to educate myself more on this topic. There is so much to learn. I just want to be able to...
Laurie Gedz
nikgmom
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Sep 4, 2008
1:12 am

Thanks Amy, I find this very interesting. I'm glad to hear that Aidan is doing well after his BMT. I am a Evans's patient and have not been to a immunologist...
evb427@...
evanswmn
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Sep 4, 2008
1:15 am

thanks for the information, yes the group does seem quiet lately, Paul is now 21, he was 12 when we first joined, he is doing well from with his Evans, he has...
bettanmic@...
bettanmic
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Sep 4, 2008
3:27 pm

Hi Amy, Thank you for sharing.That is very helpful!Rebekah has been doing well since February...we are hoping it stays that way, once cold season hits:)I am...
Jn New
dadeslot
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Sep 4, 2008
4:27 pm

Hi Amy, Thanks for the update. It is wonderful to hear how well Aidan is doing. Who was the doctor that spoke? I definitely need to look into meetings here in...
SAnder823@...
sander823
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Sep 6, 2008
9:45 am

Susan,   Thanks for sharing the information about the NIH study!  How exciting!  I hope more evans patients will get involved.  I know we had an excellent...
Amy Walsh
smlybly
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Sep 6, 2008
6:47 pm
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