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I am a 45-year-old father of five (one girl) who has lived with WAS but no BMT. I too have been under Dr. B's & Dr. C's care at NIH. Had a splenectomy at 28 and got to enjoy a bout of lymphoma two and a half years ago (still gone as far as the CT scans indicate). While two of my older brothers passed away at 5 yo (one from ITP, the other from an infection), I grew up pretty normal except I bruised easily with my 20-30K platelet count. (No, I didn't play formally in contact sports but I did play touch football and basketball around the neighborhood. I was either very lucky or Somebody was watching out for me.) Autoimmune vasculitis set in roundabout when I was 11-12, and that has plagued me since. This was my primary motivation for my splenectomy; now I can take ibuprofen to control it, and in my old job at Johnson Space Center (I taught astronauts & mission controllers how to fly the shuttle on-orbit) I had to stand in the simulators a lot and such "static" situations tended to bring out the vasculitis.
I just wanted to drop a note to let y'all know that there are at least a few of us out here who are now facing the wonderful medical annoyances of getting old...lower back pain (from lifting too many kids too many years) and creeping cholesterol (but my chemo actually brought my cholesterol down!) and things like that. Warmest regards to all, and Godspeed to each of you as you face your own unique challenges. Please remember, as I noted in the dedication in my first space-thriller novel (to the parents of children with inherited immunodeficiency), your children love you more than you will ever know.
Contact BobM at the IDF Discussion Forum