Weak Bones, Strong Wills: The Stories of XLH

Description

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. INTRODUCTION DIAGNOSIS The Science Mommy Memories by Joyce Olewski Inman My Journey with XLH and the Lessons I Carry in My Bones by Sarah Quereau EARLY YEARS The Science Horse Pills and Little Footballs The Braces by Chris Younger The Pink Liquid by Kimberly Murray Clinical Trials by Sanders Inman Bionic Woman in Training by Latrell Castanon Helpless? Not Me! by Carol from Missouri XLH is Hard and Amazing by Raya Quereau The Glass is Half Full, Part One by Nancy J. Alauzen Rare-Disease Children and Their Parents by Sheila G. Hunter A Child of the Forties by Lorna Brandt Busted, With a Capital B by Gini Patrick Resilience Through Adversity by Kaggy Dale Someone Who Understands by Bess Thomason Smith The Sibling Experience by Marah Inman TRANSITION TO ADULTHOOD The Science On Becoming a Mother by Kimberly Murray The Person I Am Today by Latrell Castanon Over Forty-Five Years of Clinical Trials by Geoff Edelson An Addendum to Forty-Five Years of Clinical Trials by Joyce Olewski Inman Life's Lively Lemons by Bryan from Missouri Then and Now by Rachael Jones I Go Through Life with Confidence by Rustam Zinnatullin Stares by Chris Younger LATER YEARS The Science Mrs. Smith's Bones Are Sick! by Bess Thomason Smith Long-Term Consequences of Treatment, Anonymous Music Inspires by Valery Didula Just a Bit Smaller by Jessica G. Bicycling Through Life with XLH/VDRR by Mary Hawley The Benefits of Exercise by Michael Lamoureux Milestones by Andrew Shortall The Glass is Half Full, Part Two by Nancy J. Alauzen A Perspective on Life by Jon Rann Did You Know? by Gin Jones Height Doesn't Matter by Marina Velazquez Aging With XLH by Lorna Brandt What You Mourn by Sheila Black XLH DAY Love, Support, and Community by Elizabeth Olear Comparing Notes at XLH Day by Nancy J. Alauzen Late Bloomer by Gini Patrick FINAL THOUGHTS The Science Fiction What's Normal? by Gin Jones What Can XLHers do? ABOUT THE NETWORK ABOUT THE XLH NATURAL HISTORY STUDY AND REGISTRY OTHER RESOURCES CONTRIBUTORS