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Hi Dee
Hi Dee,
I also have moderate AA (has progressed from mild in 2 yrs), and am also a mom (of 1). I have a TERC mutation, which puts me at risk for pulmonary fibrosis and hepatitis. I see Dr. Neal Young at the NIH, but live in Austin, TX. He's going to start me on Danazol next month. Other than that, I've been healthy and only needed 1 blood transfusion in December 2009. I am trying to help myself with radical diet changes, namely trying a vegetarian diet (I do good unless my husband cooks bacon!). I would love to keep in contact with you, for support and questions..You can send me a message, Linda
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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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