While doing some housekeeping, I realized that our Yahoo group for adults with HPS has really come a long way! We were founded on July 11, 2004 with just a handful of members. Today we are 85 and exchange several hundred messages a year - some of just chit chat but others of emotional support as we all try to figure out this life with HPS.
I started the group because my first HPS conference had such an impact on me. I was officially diagnosed at the end of the summer, but it wasn't until February of the following year that I got to attend an HPS conference in New York. Until then I'll I'd read about HPS was gloom and doom. My lungs were already affected and all I heard were negative things about my life expectancy etc.
Going to the HPS Conference and meeting so many other people walking in the same shoes, yet thriving, was the best thing that could have happened to me. As the next year went on I was frustrated that such a wonderful support mechanism was only available once a year. So, I talked to Donna and started the Yahoo group.
Since then we've grown so much. Carmen joined me as a moderator in hopes that we might get more involvement from Spanish speakers. We've grown into a tighter-knit family and we've grown to include others who, although they might not have an HPS diagnosis, they do have medical problems similar enough that we hope they can find support among us. Some have a lack of delta dense bodies on the membrane of their platelet cells, and yet don't have albinism. Others have albinism and health issues very similar to HPS, but they don't meet the current definition. There is still so much to learn about albinism in general and the syndromes that involve albinism in particular.
I started the group because my first HPS conference had such an impact on me. I was officially diagnosed at the end of the summer, but it wasn't until February of the following year that I got to attend an HPS conference in New York. Until then I'll I'd read about HPS was gloom and doom. My lungs were already affected and all I heard were negative things about my life expectancy etc.
Going to the HPS Conference and meeting so many other people walking in the same shoes, yet thriving, was the best thing that could have happened to me. As the next year went on I was frustrated that such a wonderful support mechanism was only available once a year. So, I talked to Donna and started the Yahoo group.
Since then we've grown so much. Carmen joined me as a moderator in hopes that we might get more involvement from Spanish speakers. We've grown into a tighter-knit family and we've grown to include others who, although they might not have an HPS diagnosis, they do have medical problems similar enough that we hope they can find support among us. Some have a lack of delta dense bodies on the membrane of their platelet cells, and yet don't have albinism. Others have albinism and health issues very similar to HPS, but they don't meet the current definition. There is still so much to learn about albinism in general and the syndromes that involve albinism in particular.
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