Living life as a rare individual and patient has its challenges day to day. The best feeling in the world, though, is having support: being around people who know what you are going through, and actually get it– because they’re probably going through it too.
Hermansky Pudlak Syndrome (HPS) is what I have. HPS is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding. This disorder affects people around the world, but mainly on the island of Puerto Rico.
A lot has changed in the 27 years I’ve been dealing with this rare disease. My goal is to find a cure. We still don’t have one and hopefully sharing my story will inspire others to help find one.