Below is a video I wanted to post just because my friend Casey did such an awesome job with it. She tells the story of how she was diagnosed with Hermansky-Pudlak syndrome, or HPS. Casey thought she had ocular albinism. The pigmentation among people with HPS can vary widely, so often those affected think they have ocular albinism. Casey saw the Mystery Diagnosis show, and that is how she was diagnosed. Now, she's making a difference by helping to educate others about HPS.
I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.
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