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Old Wed Apr 21, 2010, 08:19 AM
Robi1Knobi Robi1Knobi is offline
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Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Hi Michelle, did you progress from mild, or did you go to the hospital with severe? I wonder how long it will take me to go to severe, since I went from mild to moderate in 2 years. I know everyone is different, but just curious about you. Sorry you couldn't make the walk, I was proud to be able to walk it and support all of us. I can't go to the May lecture, I have to work (. Dr. Scheinberg is one of my docs with Dr. Neal Young, I just went to NIH in March. Do you go there too? I have been going since getting diagnosed in 2007, in Dallas by a transplant doc. The Dallas doc said I had moderate-severe at the time, but when I went to the NIH for a second opinion, they told me it was mild..
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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