I recently met several people with XLH and was i name of the types pain that these people live with. The people I met all had tremendous bone pain due to fractures and extra bone growth in addition to the osteoarthritis and spinal stenosis pain that many people are more familiar with.
fascinated to learn that there are so many different names for it:
Doctors may call XLH by many
other names:
• Familial Hypophosphatemia
• Familial Hypophosphatemic Rickets
• Genetic Rickets
• Hereditary Hypophosphatemic Rickets
• Hypophosphatemic Rickets
• Hypophosphatemic Vitamin D-Resistant Rickets
• X-Linked Hypophosphatemic Rickets
• X-Linked Rickets
• X-Linked Vitamin D-Resistant Rickets
• Vitamin D-Resistant Osteomalacia
• Vitamin D-Resistant Rickets
Their support organization is XLHnetwork.org