I’m new to this group been diagnosed with mds (w/mutated sf3b1 gene w/o. Ringed sideroblasts) which in its self extremely rare 98% of mds people with mutated sf3b1 gene have ringed sideroblasts seems to be a causal relationship so very rare situation also Prbca and lgl all of which are thought to be immune system gone wild. Have been stable for almost a year prednisone only treatment.Only real complaints are exhaustion and breathlessness which is constant. I’ve gone from running daily on the beach to huffing and puffing walking bed to couch. HAte it! I’ve noticed reading a few posts people mention centers of excellence but don’t identify them is there something wrong with saying I’m going to USC to see Casey O’Connell after insurance turned down UCSD (La Jolla)? I’ve been anemic probably 8 years but only diagnosed @18 months ago when symptoms became obvious something was very wrong.well that’s it. Had not planned on writing a book ….
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