A few weeks ago one of the HPS moms who has a daughter adopted from India forwarded me a contact in India. It turns out one of his friends had been diagnosed with HPS and was struggling with pulmonary fibrosis. Unfortunately, there was little help that we could offer. He was too ill, and too far away, to try for one of the NIH trials. Although he was never able to officially join the network, I've followed his story through his friends.
I'm sorry to say that this past week Santosh passed away. Even though I never knew him, I feel the loss of his friends. I know what it's like to lose a friend. And, although no one else in HPSland besides this mom and myself ever really knew about him even, I feel it's important to honor him as part of the HPS story.
Santosh had many friends with albinism in India. He seems to have been very well liked and respected. Thus, his life and story was known and felt by many others in India with albinism. Perhaps his story will have generated even just a little more awareness about Hermansky-Pudlak Syndrome in India. For that, we all, every one of us with HPS, owe him a debt. It's his story, and others like it, that help us to outreach beyond just the Puerto Rican population and demonstrate that HPS happens everywhere in the world. Every community of people with albinism should be aware of it.
So, hopefully we can continue some of our outreach work in memory of those that have gone before us, and are part of our collective story, like a guy in India we never really even knew - Santosh.