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Old Tue Sep 13, 2016, 11:22 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi chparmley,

I would encourage you to go to the AA&MDSIF website and watch some of their very informative videos on AA, bone marrow failure diseases, and transplants given by experts all over the country. Start with the basics. There is a lot of information out there:

https://www.pathlms.com/aamdsif/categories/363/courses

AA and MDS are very complicated diseases and your doctors will likely not offer you a transplant until they have a clear diagnosis. The treatment regimens are different depending on what you have and whether there is an inherited component.

It is interesting that the steroids are helping maintain your counts. That is atypical for AA.

Best of luck in your search for answers and treatments. You are young and that is good!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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