The XLH Network - Your support network for
The mission of the XLH Network 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. (To see more information on our mission and vision click here.)
The mission of the XLH Network 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.
(To see more information on our mission and vision click here.)It usually first shows up as bowed legs in a child and rickets may be diagnosed, but it is often mistaken for nutritional rickets. However,it resists traditional Vitamin D and sunshine therapy, and vitamin D levels are usually normal. These girls are twins--one having the mutation causing XLH and the other not. The twin on the left demonstrates the classic signs of bowed legs and slowed growth of a child with XLH, but not all will have the same degree of symptoms.
X-Linked Hypophosphatemia is not often seen, so not a lot of information is available. It's a condition that is usually diagnosed in children, but being unusual it is often misdiagnosed or in milder cases may not be focused on by the physician or family.
Specific tests are needed to know what is causing the problem. XLH is rare, so most doctors will never see it. If you or your child has been diagnosed with XLH, or if you think your child might have it, you need to find a doctor and facility experienced in recognizing it and dealing with it. It’s important that it’s treated properly, and that takes someone with XLH experience
Welcome to the XLH Network. If you’re dealing with XLH – also known as X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) and even Genetic Rickets – you know the fear of not knowing what to do or where to turn.
We know that fear. We’ve been there. We started this network because our own loved ones have it. We’re here to help. Please let us.
XLH Day 2013
Videos and pictures are now available!
Go to www.xlhday.com
© 2011, 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 listing of XLH research is available. Please read our full disclaimer.
- Advocacy with ASBMR
- It's easy to think of politicians as ignorant or foolish or self-aggrandizing, and I'm about as cynical as anyone, so I was pleasantly surprised by the experience of visiting Capitol Hill to advocate for sustained funding for basic science research at Nat…
- New NIH Research Study
- NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated HypophosphatemiaPrincipal Investigator: Dr. Rachel Gafni, MDSponsoring Institute: Craniofaci…
- Rare Disease Week
- The last day of February each year is World Rare Disease Day. This year, it falls on February 28th.Here in the U.S., several medical-professional and patient-support groups have gotten together to make the entire week into a time of awareness and advocacy…
- The Social Media Flashlight: How Facebook Demystified XLH
- We have another guest post today, this time from Jennifer West. She's the mother of an XLHer, who lives and works in the Wisconsin Northwoods. She's also an antique-collector and nature-lover. 2009 was one crazy year. Our youngest child was born, and…