Yes, I know, I haven’t blogged much in the past few days. I’ve been rather busy! Over the weekend and into this week I attended the American Academy of Pediatrics with Gina and Hilda from the HPS Network. We partnered with a group from NOAH (National Organization for Albinism and Hypopigmentation). It was a great chance to get to meet some others in the albinism community I didn’t really know much about before. Chris Meyers was the muscle, constructing the booth and tearing it down again. (Thank you Chris!!!!) We had several moms with children that had albinism, and another adult with albinism named Liz.
I know you all won’t believe it, but in the chaos of putting together my new office, I left my camera on my desk at home. I can’t believe it!!!! However, photos will follow as thankfully some of the NOAH folks had their act together and brought cameras.
NOAH promoted their new book on raising a child with albinism as well as their rapid responder program for families with a new albinism diagnosis. The HPS Network promoted screening for HPS for children with albinism.
I was very grateful, if not somewhat surprised, at how receptive the doctors were to the idea. When they learned the test was a blood draw, and that it was free – no one argued with the idea. I know so many families run into trouble when they go to their doctor to be tested for HPS. I think perhaps when the doctors haven’t heard of the syndrome, they are less likely to take it seriously. I hope that by providing just a little bit of information, as well as a handout about the Dr. White test, that it will make it that much easier for some families in the future to get an accurate and early diagnosis.
Of course, the day after the show I pretty much fell apart. I seem to do this – I run like an energizer bunny until I just can’t anymore and then just crash. It’s a reminder, a frustrating reminder, that I just don’t have the stamina I once had.
I know you all won’t believe it, but in the chaos of putting together my new office, I left my camera on my desk at home. I can’t believe it!!!! However, photos will follow as thankfully some of the NOAH folks had their act together and brought cameras.
NOAH promoted their new book on raising a child with albinism as well as their rapid responder program for families with a new albinism diagnosis. The HPS Network promoted screening for HPS for children with albinism.
I was very grateful, if not somewhat surprised, at how receptive the doctors were to the idea. When they learned the test was a blood draw, and that it was free – no one argued with the idea. I know so many families run into trouble when they go to their doctor to be tested for HPS. I think perhaps when the doctors haven’t heard of the syndrome, they are less likely to take it seriously. I hope that by providing just a little bit of information, as well as a handout about the Dr. White test, that it will make it that much easier for some families in the future to get an accurate and early diagnosis.
Of course, the day after the show I pretty much fell apart. I seem to do this – I run like an energizer bunny until I just can’t anymore and then just crash. It’s a reminder, a frustrating reminder, that I just don’t have the stamina I once had.
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