Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Hi, I'm Rick Dill, dad to Janet who is 37 and a leukemia survivor. Her AML came in her late 20's after a very rare autoimmune disease, pyoderma gangranosam which most doctors never see and know little about. The PG was cured with thalidomide before the AML showed up, but she was diagnosed with myloedisplasia (no symptoms) before the AML. She underwent chemo for the leukemia, grew her hair back, and was a very happy bridesmaid at her brother's wedding a couple of years later. Then her remission failed and the only option for survival was a bone marrow (stem cell) transplant. The same brother was a match (it is one in four among siblings). We call that period a MME (most miserable experience), but there was no choice, so she went to Yale for the procedure. She did survive, although it was months of seeing her waste away before she turned around. Now over six years later, she is healthy, strong, and on absolutely no meds. We occasionally kid her about having boy blood, though. Leukemia, is rare in adults with down syndrome, but it clearly does happen. I am impressed with the progress toward understanding the high prevalence of leukemia in young children with down syndrome and in developing treatments. Sadly, though, we haven't yet found the treatment that will cure all, even though the success rate is much higher than for leukemia in children without down syndrome. Rick, Dad to Jan who works helping people more handicapped than herself Quote Link to comment Share on other sites More sharing options...
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