Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Hey Jerry, I read your post to me a few days ago and now I can't find it. I was in a rush and I've been offline a few days. I was part of organizing a Midwest meeting of NOAH - National Organization for Albinism and Hypopigmentation. We had several docs in town for the event and I was playing hostess along with two super moms of kids with albinism. I'm sure we can relate on a lot of issues vision wise. I try to explain to people that are critical that if I just had the lung issue, or just the gut issue or just the vision issue, I'd be fine - it's all of them together that are causing me a problem. Grin! And yes, please keep an eye out in the low vision/blindness world for others with albinism. So many don't know they might have HPS until it's too late. Just at this conference this weekend I think I found another person diagnosed with IPF that really has HPS. We'll have to get her tested for sure It was funny because I'd noticed her early in the day because of her coughing and breathing, and made a note to find her at lunch. After I gave my talk on HPS, she found me. She'd never heard of it - not surprising. Well, time for bed. Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
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