Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Hello there, I've been gone from the group for a little bit. We just had our annual Hermansky-Pudlak Syndrome conference. It was GREAT!!!! Our first HPS transplant person was there - he's five years post transplant. And our most recent transplant person was there too. For any newbies since I haven't been online - I'm . I'm now 35 years old. I was diagnosed with HPS at 29 and the PF of HPS at 33. I"m in one of the Pirfenidone trials and so far am holding steady, knock on wood. And for everyone else - hello! Hermansky-Pudlak Syndrome albinism 02 / PF 06 www.heatherkirkwood.blogspot.com Quote Link to comment Share on other sites More sharing options...
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