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Welcome to The XLH Network Inc.
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.
News
Quick Facts
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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.
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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.
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Diagnosis
is often made by considering a number of factors such as family
history, blood tests and observation of
symptoms.
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Since
Symptoms
vary from patient to patient in their severity, and labs often
do not report
pediatric reference ranges,
diagnosis can sometimes be difficult.
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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.
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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:
times since January 2004.
Last modified May 6, 2011
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 spontaneous
dental abscesses, and low blood phosphorus levels.
© 2002-2011,
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 complete web-site
bibliography
is available. Please read our full
disclaimer.
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