Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood.blogspot.com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
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