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I'll reply later in the day, I hope.
The conferences are great, but you will probably not find any PRCA patients in Tampa. You WILL find people who are undergoing similar experiences. That, by itself, will be helpful. I'm not sure what they do in the one day conferences, but they used to have separate groups for patients, for spouses, and for kids. Go to the sessions for AA because it is the most similar to PRCA.
You are on the right track. It took me three years to realize just how rare this is and how little doctors knew. They like to say it's "not very common". That's doctor talk for "I've never seen this before".
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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