Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Hi , So glad to see your nose poke in here! How was the HP conference? It is always amazing to meet lung transplant patients who are doing well, isn't it? Glad everything is holding steady with you! Poke your nose in more often! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, March 28, 2009 1:21:44 AMSubject: Poking my nose in 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...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Trust me, I've got just the nose to do it - ha ha ha - a right big honker. It was wonderful to meet our transplant folks. For so many years transplant centers wouldn't even evaluate a patient with HPS - they just didn't understand it because it's rare. It was also so good to spend time with so many people that walk in the same shoes. We all have albinism, vision issues, bleeding issues - many with GI issues - and many of course with PF. Because of the albinism, other people in the hotel often mistake us for a family reunion - and we are a family reunion in a sense. Hermansky-Pudlak Syndrome albinism 02 / PF 06- In Breathe-Support , Beth wrote:>> Hi ,> So glad to see your nose poke in here! How was the HP conference? It is always amazing to meet lung transplant patients who are doing well, isn't it?> Glad everything is holding steady with you! Poke your nose in more often!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Saturday, March 28, 2009 1:21:44 AM> Subject: Poking my nose in> > > 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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