This week, our webmaster, who prefers technology to essay writing, shares a little about his experience with XLH and involvement with the Network.
1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?
My mother became ill when I was nine, with frequent and severe headaches. In my early thirties, I started having the same symptoms I remembered her having. With a little research I discovered her diagnosis was something none of my doctors had heard of, called syringomyelia. I did a little digging around and learned it was not known to be genetic. I knew we both had vitamin D-resistant rickets (the name I knew then), so I decided to research that. While searching the web I found the "Vitamin D Metabolism and Rickets Web Site," as our site was called then. I subscribed to the F-HYPDRR mailing list, and two days later the subject of headaches came up. I was sure there was a connection between syringomyelia and XLH, eventually found it, in a type of Chiari malformation, and had surgery to correct it. If only the XLH Network had been around while my mother was sick, she to might have found some relief.
I became more active with the Network in 2005, when the previous web-master stepped down. I volunteered to help out and have been doing so since. My goal has been to ensure that anyone searching the web for information about their symptoms will be able to find us. I hope soon we'll have information about the cure.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I enjoy technology and keeping current with it. I have an active interest in everything involving the internet. Getting to understand and playing with new technology is how I spend the little free time I have.
3. What XLH project are you working on now that you're particularly enthusiastic about?
I'm excited to see all the new content posted to site and doing what I can to help accommodate that.