A big thanks to Lisa who created the map above for future HPS Network presentations.
One problem we encounter doing outreach for Hermansky-Pudlak Syndrome is that too often people believe it’s a syndrome that only happens to people with albinism of Puerto Rican background.
That’s just not true.
Yes, HPS is by far more common in Puerto Rico, but it happens all over the world. Yet we are still hearing from too many people that test positive, “Well, my doctor didn’t want to test me because I’m not Puerto Rican, so they thought the odds were too small to bother.”
While HPS certainly isn’t common, it also likely isn’t as rare as everyone assumes since so many people with albinism are never tested and may even die never knowing they had the syndrome.
Thus, Lisa worked with Donna to create this map which we will update when necessary. It shows the countries of origin of the families in our database, as well as countries where we’ve read a medical paper about a case, yet don’t know the family personally.
This map does not illustrate the number of cases or location of a family in any given country. It merely shows the countries where there are known cases.
I got Donna’s permission to borrow the map and post it here. I thought you all would find it interesting.