Hi David and Maggie
My story is the same as yours...I went into have my daughter in 2001, and the cbc before I was to deliver was very low, hgb was 6, platelets 60K. I got epo for 3 months but it didn't help, then was followed by several different hematologists and had many bone marrow biopsies. My lab results all said hypocellular bone marrow or pancytopenia, until getting diagnosed with mild AA with TERC mutation in 2007. In 2009, it progressed to moderate, and I have had 2 blood transfusions. I am currently under Dr. Neal Youngs care, but am not a candidate for transplant, because of the TERC. If you want to talk or need support, feel free to message me. Sincerely, Linda
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.