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 experience at NIH when we went three years ago. My kids loved the Children's Inn. I have not had contact with Dr. Uzel in awhile, but I heard she recently had a baby. Is your son still involved in the study with Dr. Holland?
The doctor who spoke at the IDF dinner was Dr. Troy Torgerson. He practices at Seattle Children's Hospital but was in Chicago for an educational session with one of the local teaching hospitals. IDF sponsors physicians to come and teach resident doctors at teaching hospitals about PIDDs. It is a great program because your average general practice doctor has limited knowledge of immunology. While Dr. Torgerson was here, he also attended the dinner for patients and their families.
Are you registered to recieve the IDF newletter? If you register on-line (just add yourself to their contact list) you will begin to recieve the newsletter. It has a calendar of events section and will usually list all meetings in the USA. So if any meetings are scheduled in the NJ area, it is a great way to find out about them. If you register, you will also be added to thier mailing list, and will probably recieve invitations to any events in your area.
I know I have personally learned a lot from attending meetings and talking to other families.
Amy
--- On Sat, 9/6/08, SAnder823@... <SAnder823@...> wrote:
From: SAnder823@... <SAnder823@...> Subject: Re: [EvansSyndrome] interesting topic To: EvansSyndrome@yahoogroups.com Date: Saturday, September 6, 2008, 4:44 AM
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@yahoo. com 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)
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...
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...
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...
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...
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...
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...
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...
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...
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