Contact with HPS Japan

This week we heard from HPS Japan. Oh how I wish I could find a good Japanese translator! It seems there’s an HPSer in Japan trying to get listed for a lung transplant. I’m anxious to hear back about whether they’ve had a successful HPS lung transplant in Japan. We’ve had two in the U.S., which is making it easier for other HPS’ers to be listed than it has been in the past. We also heard from a doctor in Japan with an interest in HPS. I'm already aware of several researchers in Japan doing work on HPS. One of them was at the Pigment Cell Conference last November.

Those of us with Hermansky-Pudlak Syndrome are so anxious to hear from our counterparts in Japan. We all feel so close to one another because our shared experience and we’re so anxious to learn about the experiences of those with HPS in Japan. We’re anxious to trade information, both in hopes that we can learn from them, and that they can learn from us.

It’s just in the last year that we’ve learned that Hermansky-Pudlak Syndrome is the second most common type of albinism in Japan.

Comments

Anonymous said…

How exciting. Please keep us up on what you hear from them. What else do you know about the patient waiting for a lung transplant. Male/Femanl? Age?

Julie

6:53 PM

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Living on the frontlines

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