Thread: AA
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Old Thu Mar 20, 2008, 09:21 PM
Jbsx19 Jbsx19 is offline
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Join Date: Jul 2007
Location: Florida
Posts: 29
Trish,

Hi, I am so sorry about your daughter's diagnosis and certainly understand how scared and overwhelmed you are right now trying to learn and research everything there is to know about AA. My story is posted here already. I was diagnosed VSAA in 2003 when I was 41yoa, a wife and mother of two. I was treated at NIH by Dr Neal Young ( the pioneer in AA treatment and research). I would suggest that since you are so close to NIH to at least go there and be evaluated before making any treatment decisions. Once you get treatment elsewhere, it may limit your daughter's options for treatment at NIH or in a clinical trial of some sort. Whether insurance is or is not an issue for you, my treatment did not cost me a cent. All drugs were supplied to me at NIH and the GCsf(neupogin) was overnighted to my home. All my subsequent flights,hotels,etc are covered by NIH and AAMDS will help with initial costs of travel to NIH. You can research treatment options at www.NIH.gov and even see quite lengthy lecture by Dr. Young about AA and treatment. If you can't find the video, I have it and can email it to you.

Again, sorry you are in this situation,too...but know that you need to stay strong and focused. Knowledge is power and there are plenty of us out there to help you through that have been through it as well.

Hang in there....Judi
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Judi 46yoa VSAA diagnosed May 2003 ATG/Cyclosporine/mycophenolate treatment complete remission ukn cause. I believe caused by stress while on an antibiotic or an allergic reaction to the antibiotic. I also had ITP about 20 years prior.
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