Living on the frontlines

Hundred People Search Update: This week we have added two new HPSers to the registry. This puts us at 77 to go on this year's Hundred People Search - H.P.S. For our newer people, the Hundred People Search is a yearly outreach challenge. We've never actually hit 100. It isn't that we want people to have Hermansky-Pudlak Syndrome - it's that if they have HPS, we want them to have an accurate diagnosis and to be able to give them information to help them advocate for their needs. The scary thing isn't having HPS, it's having it and not knowing it. To that end, there was a recent lengthy discussion on one of the general albinism facebook groups about testing for HPS. Bravo on the outreach!!! Several HPS community folks spoke up and helped to educate. I don't know if these two things are related or not, but the office tells me they've had a spike in calls from people seeking information about testing for HPS. Outreach online isn't only effective - i...

Photo: This is me the week before the transplant. The one with the roses was taken on Valentine's Day. My sister-in-law gave the roses Ryan had brought her to me.   To be honest, I don’t remember much about the time I spent in the hospital before my transplant. I’m not sure if that’s because it was pretty boring and routine, so there’s just not much to say – or if it is some kind of self-preservation maneuver my brain has done to shield me somehow. After the big rush to get to the clinic early, we spent several hours in the waiting room with my luggage as if we were waiting for an airplane at the airport. It turns out the big rush was due to a hospital policy that the clinic couldn’t request a bed for me until I was actually there. The hotel Inova Fairfax Medical Center was packed to the gills, and they wanted my name on the waiting list. It was late afternoon before a bed became available. Looking back, I’m amazed at how calm we were sitting there. Perhaps we were compartmentaliz...