As I don’t have to tell many of you, women with the Hermansky-Pudlak Syndrome type of albinism have a whole set of issues related to our female health that our male counterparts never have to worry about. You know what I’m talking about – those long cycles that seem like they’re never going to end, or those heavy flow cycles that keep us at home for fear of creating a scene somewhere in public. Or, our stories of childbirth, especially for women who didn’t know they had HPS and weren’t prepared for bleeding complications. And, there are some lucky ones among us that have never had a problem out of the ordinary.
Dr. Meredith, the OBGYN at the National Institutes of Health that has taken on the cause of women with HPS, is right now pushing a research proposal through the internal review processes at NIH in hopes of getting the green light to interview women at the upcoming HPS family conference. She’ll tell us more about the details in about a week – but I think the general idea is to put together some comprehensive data about our experiences, and from that, begin to put together an OBGYN standard of care for women with HPS.
If you’d be willing to let Dr. Meredith interview you about your “female history” (should take about 45 minutes) please get in touch with either me, or the HPS Network so we can put you on the list. If you’ll be at the conference, she’ll try to talk to you then – if not – we’re putting together a list of people willing to be interviewed via phone.
Wouldn’t be nice to be able to walk in to your doctor and have something to give them about what they can expect, and which treatments have been most effective? Grin!
Dr. Meredith, the OBGYN at the National Institutes of Health that has taken on the cause of women with HPS, is right now pushing a research proposal through the internal review processes at NIH in hopes of getting the green light to interview women at the upcoming HPS family conference. She’ll tell us more about the details in about a week – but I think the general idea is to put together some comprehensive data about our experiences, and from that, begin to put together an OBGYN standard of care for women with HPS.
If you’d be willing to let Dr. Meredith interview you about your “female history” (should take about 45 minutes) please get in touch with either me, or the HPS Network so we can put you on the list. If you’ll be at the conference, she’ll try to talk to you then – if not – we’re putting together a list of people willing to be interviewed via phone.
Wouldn’t be nice to be able to walk in to your doctor and have something to give them about what they can expect, and which treatments have been most effective? Grin!
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