"We love you Susan and we're happy to help out with such a worthy cause."
"Way to go Susan!!!"
"Much love to you! Xo"
"Happy to help!!!"
"Hi Susan, thank you for thinking of me. It would be nice to see you sometime. Be well, Dimitrios"
Hi Everyone! Thanks for taking the time to read this. For those of you that don't know this story, a few years ago I was lucky enough to find a network of people who shared my same genetic disorder. It was an amazing experience since it was the first time in my life I'd met anyone at all with the same rare disease (more on that below). When I was growing up, there was very little known about XLH, and not much at all in the way of treatment or even management.
I'm so excited now to see a brighter future for younger generations with XLH. With the XLH Network's help, there are now encouraging developments in treatment, a wider range of physicians familiar with the issues involved, and a supportive environment for those of us at any age who are afflicted.
Of course, all this advocacy and research takes money, and XLH isn't exactly a priority in terms of healthcare dollars these days. So we need ALL the help we can get. Anything you can contribute will help improve the lives of all of us living with XLH.
Again, thank you for reading and I hope you will consider joining me in this project that is so personal to me. I've always been a bit shy about my condition, and asking for money is not something I'm normally comfortable doing. But when I see the children and teens at XLH Days who are struggling with the issues I did as a child, I want to do anything I can to help them have the brightest and healthiest future possible!
If you would like more information, or if you have any questions, please don't hesitate to contact me personally at SFaitos@gmail.com. For more information about XLH, read below.
XLH (x linked hypophosphatemia) is a rare, chronic and progressive disorder that affects 1 in 20,000 people. There is currently no cure and no treatment; rather treatment focuses on managing complications of the illness as opposed to the underlying cause of the illness. Those living with XLH report lifelong complications, including:
The XLH Network, Inc. is a patient led organization that serves as a worldwide support network for those living with XLH, their family members, and the clinical professionals working in the field. It is the only organization focused solely on combatting XLH and its services include, among other things:
A peer to peer community that connects patients across the country and abroad, helping them to share experiences, information and support
Patient, professional and public education
A physician referral network
Up to date information on clinical trials and research
A quarterly newsletter that keeps patients and professionals up to date on treatment news
Fact sheets, publications and educational literature for patients, physicians and dentists
A speakers bureau consisting of patients, family members and clinical professionals
The fostering of research including the Natural History Study, an ongoing research project incorporating patient clinical data that will help future researchers study how the disease develops over a patient's lifetime.
My goal is to raise as much as I can to help The Network accomplish its mission. I hope you will join my efforts by making a donation and helping to spread the word!