Friday, August 08, 2008

Hundred People Search update

This week we added one new person to the HPS patient registry, so we’re now at 86 for the Hundred People Search countdown. There are three potential HPS’ers we’re sort of “processing” right now that I think will end up being positive, but I don’t want to count anyone until they’re “official.”

We also have a new family I should have mentioned last week. They’re negative for HPS, but seem to be rather “HPSish.” In other words, they don’t meet the current definition of HPS, but we welcome and include them, just as we do with the Chediak-Higashi families, because they have so many similar issues and no where else to “fit in” and get support.

Should these families choose to participate in research, they also might yield some clues that will eventually help with the bigger picture.

But we’ll let the doctors sort out what’s related and what’s just pure coincidence. We’ll just try our best to keep supporting the people who would benefit.

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