[ … ] most people with albinism don’t have HPS. It’s sometimes hard for us to reconcile these very different perspectives on living with albinism (yes, those of us with HPS ALL HAVE ALBINISM – but not everyone with albinism has HPS.) We are not as rare as everyone once thought. Our numbers grow every day with better diagnosis. 

Even on this blog, I am sometimes of two minds about how much to share and what to write. On the one hand, I want the world to know what it’s like living with HPS. I want people to know and understand what we go through, and to understand why we need their help. On the other hand, I worry about the new person that stumbles across this blog. I worry about the person who might be so afraid if I really expressed everything happening in my world that they’d be afraid to seek testing or to find out what to do to best care for themselves. After all, not only does not everyone with albinism have HPS, but there are different types of HPS, and not all of them are as bad as others. 

[ … ]

We, the Hermansky-Pudlak Syndrome community need your help! We need to find better treatments, and someday, a cure. 

We need the greater albinism community (and the pulmonary fibrosis community) around the world to try to understand us, and to help us. We are people with albinism too. We are people with pulmonary fibrosis too. We are among you all over the world. Getting an accurate diagnosis isn’t a cure, but it can prevent unnecessary problems and it can help those affected maximize what is available to help.