Wednesday, April 1, 2015

Meet Director Gin Jones

1. How did you get involved with the XLH Network, and then how did  you become a member of the Board of Directors?
I was completely ignorant of the adult issues encountered by XLHers (and even that what I was originally diagnosed with -- vitamin D resistant rickets -- was a misnomer and the condition was now called XLH) until about a dozen years ago, when I experienced significant problems related to calcifications in my spine and ligaments and found the Network. I'd never known another person with XLH before joining the listserv. I was amazed to find that some of the things I experienced and thought were unique to me (like my feet forgetting how to walk after I've sitting for more than a few minutes) were common among XLHers. I became active on the listserv as the subscription manager and as someone who always has an opinion. Serving on the board as a director was a natural extension of that involvement.

2. What's your "superpower" -- the special skill, knowledge or experience that you bring to the board?
Others have been shy about claiming a superpower, but not me. I know I can do things with words. Of particular value in my role as social media coordinator, I can explain complex things (like medical issues) in simple terms that anyone can understand. It was a necessary skill for the practice of law, and now I'm applying it in a slightly different context.

3. What XLH project are  you working on now that you're particularly enthusiastic about?
I'm cautiously optimistic that current research will lead to what amounts to a cure for XLH within my lifetime. It's a little hard to imagine, but it's likely that children born in ten years, possibly sooner, will have a treatment available to them as soon as they're diagnosed, which ought to mean that they will grow to their full physical potential, with none of the short stature, soft bones or chornic pain that previous generations experienced. Anticipating that future, I'm starting a multi-year project to collect the stories of those of us who weren't so lucky. I will be thrilled when no one has first-hand experience of untreated XLH, but in the meantime, we need to document just what this condition does to those who do not get proper treatment, before this history is lost.

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