Living on the frontlines

Wow, just after I posted the office e-mailed to say we added another new HPS'er.....so, that's two in one day. We are now at 69 to go.  

Today we have added a new HPS'er to the patient registry, so we are now at 70 to go on the Hundred People Search H.P.S. 

Confession time. I know some may decide I’m wacky with this, but my imagination has been taken up lately by a story in the news that a non-profit, based in the Netherlands, is taking applications to be a part of the first Mars colony. Scam? Crazy scheme? Unrealistic? Farfetched? I don’t really care. I don’t intend to apply. First, I would never pass the health screenings. Even if I could, when HPS finally takes a serious toll on my lungs, I don’t think I want to be on Mars trying to cope – assuming that my lungs hold out that long. (Should you be selected to be one of the first Mars colonists, they expect training to last 10 years.) Second, I do have a tendency towards claustrophobia. I can’t imagine surviving being in a small space for the long trip to Mars, and then likely having to live in a confined space indefinitely once you arrive. Claustrophobia is one of those weird things where, in your mind, you completely understand your fear is irrational and not based on any

We are working through the backlog. Today we added seven new HPS'ers to the registry! This puts  us at 71 to go on the Hundred People Search H.P.S. Yes, that is still tracking behind, but with the lab transition, I think our numbers will be a bit off this year. Keep up the outreach! 

We have another new HPS'er on the patient registry. This puts us at 78 to go on the Hundred People Search. 

We have a Hundred People Search update today! We've added another new HPS'er to the registry. This puts us at 79 to go. Yes, that is way behind where we usually are, however; because of the change in the lab doing the HPS testing, there is quite a backlog right now. 

Yesterday was my six-month check up with the lung doc at the University of Kansas. We’ve gone to every six months to keep a closer eye on me. The reality is with HPS is that as we get older; the chances of the lung disease advancing seem to go up. I’m pushing 40, which is when most HPS’ers really start to see changes in their lungs. You’ll notice a lack of geriatric sessions at our conference! (That’s a goal by the way – to need to program for the over 65 crowd!)  I was especially anxious about the check up this time as I’ve had a constant dry cough since April. Sometimes it’s better, sometimes it’s worse – but it never goes away. There could be lots of explanations for it, but as I zero in on 40, one very possible explanation was advancement in my pulmonary fibrosis.  For days before the appointments I tried to keep as busy as possible. If I stopped to think too long, I’d get very anxious.  I’ve felt much more at ease about that possibility the last few years because I do have

I've often wondered about how the recording of history would be affected by so much online communication. A few years ago my family got some things out of storage we'd put in storage before moving to Germany. Twenty years later things that seemed so precious now mostly looked like junk. One of the  treasures, in my eyes, however, were letters my mother had written home during her time as a Red Cross worker in Vietnam in 1969. They were so interesting! What I'm sure seemed like boring routine to the eyes of 1969 was so informative to the eyes of 2006.  But today we text and blog and facebook. None of it is written down in diaries or journals to be discovered by family or historical researchers in a hundred years. Would we lose our history?  Take this blog for example, as lousy as it has been in recent years. It records much of what it's like to live with Hermansky-Pudlak syndrome (and other life things from time to time). How might that inform a future world of medic