Living Life As a Rare Patient and Individual

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.

 


Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email
Close Menu