I've become involved with research and advocacy around XLH (x linked hypophosphatemia) since joining the faculty at Quinnipiac. We will be hosting XLH day this fall! My particular interest is in the transition to adulthood and the adequacy of adult-oriented healthcare (of course) but also on the reality of the disease - and disease progression - as individuals get older with XLH. It is NOT just a disease of childhood! It 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. I am pleased to serve on their advisory board. 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!