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XLH Network Rickets

We are a worldwide patient support organization for people living and dealing with X-Linked Hypophosphatemia (XLH) also known as Vitamin D-Resistant Rickets (VDRR). We are dedicated to understanding XLH in terms of support, research and developing new treatments. Registered members may visit our Members Web Space. Not already a member? Learn about the benefits of membership and how to Join our organization. Do you have a question or did you forget your password? Please contact us and we can help. Need info fast? See Quick facts.

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Quick Facts

  • XLH is a genetic metabolic condition also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) and even Genetic Rickets.
  • X-Linked Hypophosphatemic Rickets (XLH) primarily affects bone and tooth development. The result is that the bone and teeth are not as well mineralized as they should be. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spontaneous dental abscesses, elevated alkaline phosphatase (mostly in children) and low blood phosphorus levels due to phosphate wasting ( high urine phosphorus). Intact parathyroid hormone (PTH) can also be mildly elevated even before treatment.
  • Diagnosis is often made by considering a number of factors such as family history, blood tests and observation of symptoms.
  • Since Symptoms vary from patient to patient in their severity, and labs often do not report pediatric reference ranges, diagnosis can sometimes be difficult.
  • While each patient's needs may differ and must be determined by his own physician, the standard treatment regimen for X-Linked Hypophosphatemic Rickets (XLH) involves carefully balanced amounts of phosphorus and a specifically-activated form of vitamin D, which together improve the body's ability to process the raw materials necessary for healthy bone formation.
  • The physician managing XLH care must be one who understands the counter-intuitive nature of its treatment.

This page and our members web page have been accessed a total of: Counter times since January 2004.

Last modified Apr 17, 2008

XLH is also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) Rickets and even Genetic Rickets. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spotaneous dental abscesses, and low blood phosphorus levels.

© 2002-2008, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers of the F-HYPDRR group, a mailing list for The XLH Network Inc. A complete web-site bibliography is available. Please read our full disclaimer.