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S,
I was diagnosed at 47. Since then I have "met" many people younger than I am who are diagnosed. In fact, in Germany a study was conducted which included 232 patients under 50. The same study referred to other studies which had 151 patients under 50 and another study with 205 patients under 60. I don't think it is as uncommon as people think.
I am concerned that your dad is still on erythropoetin if it isn't working (I think transfusions every 2-3 weeks isn't working, unless he was receiving them more frequently before that). I can't cite them right now (maybe someone else can), but I think there have been problems with continuing erythropoetin when it isn't working. Honestly, I don't even recall the problems at the moment.
Do you know what, if any, chromosomes are affected? A lot of people here have had great success with Vidaza. Personally, I would try it if I were getting frequent transfusions, although my next drug will likely be Revlimid.
Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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