Here is the website for the AAMDS organization.
http://www.aamds.org/
Call them and ask for Leigh Clark. She will be very helpful in getting information and help for you.
http://www.aamds.org/support-and-com...tient-educator
They were off two days because of the storm, so they might be a little behind.
As far as doctors go, Dr Robert Collins at UT Southwestern spoke at the recent patient family conference in Dallas. He is the one I would choose if I had MDS.
http://www.utsouthwestern.edu/fis/fa...t-collins.html
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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/
Last edited by triumphe64 : Wed Oct 31, 2012 at 03:24 PM.
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