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I have never heard of 1p36 deletion syndrome, so I looked it up. There was nothing mentioned about anemia or other hematology problems.
I have pure red cell aplasia. I do not make red blood cells. There is a genetic form of this called Diamond Blackfan Anemia. It is also very rare. Have the doctors ruled that out?
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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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