Thursday, April 05, 2012

HPS – It isn’t just a Puerto Rican thing

One of the myths about Hermansky-Pudlak Syndrome is that it’s a Puerto Rican disorder, thus, if you’ve got albinism, but you’re not Puerto Rican, you don’t need to worry.

Wrong.

While HPS is one of the most common genetic disorders among people of Puerto Rican ancestry, (and thus people with albinism of Puerto Rican ancestry have a much greater chance of having the HPS type of albinism), it doesn’t just occur in Puerto Ricans.

I’ve blogged many times in the past about the wide diversity of ethnic backgrounds in the HPS community, even if most do have Puerto Rican backgrounds. We have members all over the world.

Today I was going through medical journal articles on HPS from the last year, and it just reminded me that’s a point we should make again.

In the past few months we’ve added two new members of Chinese background. Today I saw a medical paper in a dermatology journal about a study done of 52 people with albinism from China. While most had another type of albinism, one did test positive for HPS type 1.

One of our HPS researchers, Carmelo Carmona, published a paper in the last year documenting cases of HPS from Hispanic people from Cuba, Honduras, Mexico and Venezuela. 

We have organized HPS groups in the UK, India and Japan.

Yes, HPS occurs in all ethnic groups all over the world. It really is something everyone with albinism should at least be aware of. 

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