Whether you have XLH yourself, or are a caregiver for someone with XLH, you may find yourself attending various appointments, meeting new professionals, and having many things to remember. It can be overwhelming to say the least. Not only physically draining to be involved in such a busy schedule, the mental load of keeping track …
Fatigue is a common symptom for those with XLH. To various degrees, we lack stamina. XLH affects the mineralization of bones and proper muscle function throughout the body, resulting in both body and mental fatigue on a daily basis. Everyone has a different level of severity, but will inevitably struggle with fatigue on some level …
Did you know there have been many different names used in the medical and scientific community before its present iteration of X-Linked Hypophosphatemia? It has also been called : X-Linked Hypophosphatemic Rickets Familial Hypophosphatemia Familial Hypophosphatemic Rickets Vitamin D-Resistant Rickets (VDRR) Genetic Rickets This can be a barrier for people looking for peer support to …