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Keeping our collective fingers crossed

Since I first noticed the Associated Press story about Hermansky-Pudlak Syndrome on the wire Friday, I’ve been on pins and needles. My latest count shows the story was picked up by a total of 84 news outlets.

What will happen next? The article didn’t contain any way to contact the Network or obtain testing for HPS. Will anyone read it – a doctor, mother, father or friend – and see someone they know in the description? Will they be brave enough to pass it along? Will they go to the effort to google HPS? Will they be too frightened by what they read to follow it further? Will they understand that early diagnosis gives you such advantage in fighting the disorder?

All weekend long I’ve had calls from HPS’ers wanting to know if anyone new has materialized. Did the coverage uncover any new families? It isn’t that we’ve got some sort of morbid wish that some new sick person will appear. It’s that we know how important this diagnosis can be, and we all know there are literally hundreds, probably even thousands of people with albinism out there that have no idea they have a type of HPS.

Because people with albinism aren’t routinely tested, so many people won’t ever know they’ve got HPS until they find themselves in a crisis, if they ever know it at all.

We have so many hopes riding on this coverage.
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