Everyone in this photo has Hermansky-Pudlak Syndrome. This was the photo taken at the end of the 14th Annual HPS Family Conference. In total, the conference had 220 attendees - these are only the attendees with HPS whose flights hadn't already left by the end of the last day.I’m home from the 14th annual Hermansky-Pudlak Syndrome family conference and, well, I’m TIRED! It’s as if I went off to another dimension and have just been plopped back into the world of reality. The house is still dirty and in desperate need of some TLC and tomorrow morning God only knows what’s waiting at work. I’m not checking my work e-mail tonight in hopes of preventing any going-to-press crisis from affecting some much needed sleep tonight. I can’t do anything about any problems tonight anyway.
Getting to the HPS conference isn’t easy. It can be expensive and hard to get off of work – but, for me, it’s as important (probably more so) than anything else I could be doing to better my health. I don’t even have the words to explain what it’s like to spend an entire weekend with people just like yourself who really do understand all that you’ve been through and all that you think about on a regular basis. It’s as if this undercurrent of stress that perhaps you’re not even aware of much of the time is suddenly gone.
This may sound very strange, but in the middle of the HPS conference amid pictures of cells and discussions of treatments is where I feel most like the HPS “thing” has been removed temporarily and life is back to “normal.” The HPS conference is such a respite from the real world.
Over the next few days I’ll be posting lots of pictures and blogging a lot about the conference – but for tonight I’m a little tired and not feeling entirely eloquent.
I will say that two new protocols were announced at the conference – one for GI issues and for pulmonary fibrosis. I am going to blog about the GI one first in hopes that Katy’s family might find that useful.
Getting to the HPS conference isn’t easy. It can be expensive and hard to get off of work – but, for me, it’s as important (probably more so) than anything else I could be doing to better my health. I don’t even have the words to explain what it’s like to spend an entire weekend with people just like yourself who really do understand all that you’ve been through and all that you think about on a regular basis. It’s as if this undercurrent of stress that perhaps you’re not even aware of much of the time is suddenly gone.
This may sound very strange, but in the middle of the HPS conference amid pictures of cells and discussions of treatments is where I feel most like the HPS “thing” has been removed temporarily and life is back to “normal.” The HPS conference is such a respite from the real world.
Over the next few days I’ll be posting lots of pictures and blogging a lot about the conference – but for tonight I’m a little tired and not feeling entirely eloquent.
I will say that two new protocols were announced at the conference – one for GI issues and for pulmonary fibrosis. I am going to blog about the GI one first in hopes that Katy’s family might find that useful.
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