Weak Bones, Strong Wills: The Stories of XLH - Paperback

by Inc The Xlh Network (Author)

X-Linked Hypophosphatemia (XLH) and the related autosomal and tumor-induced hypophosphatemias are metabolic bone disorders characterized by the wasting of phosphorus, leading to soft, poorly mineralized bones. Our bones are soft, our lives are hard, but we are strong and resilient. We persevere, despite all the challenges. But if there's one thing that can slow us down, it's the lack of solid information about the real-life consequences of our rare medical condition. There's so much about living with XLH that isn't in the scientific literature, either because it's never been studied, or because it cannot be reduced to numbers and graphs. That's why we're here to tell the real stories of XLH and the people affected by it. Not the medical jargon, not the numbers and charts, but the real-life experiences of patients and their families. The mission of The XLH Network, Inc., a 501(c)(3) non-profit, is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.