MANY SYMPTOMS.
ONE CAUSE.
People living with XLH.
People living with XLH.
MANY SYMPTOMS.
ONE CAUSE.
(X-LINKED HYPOPHOSPHATEMIA)
Stiffness, bone and joint pain, and ongoing dental issues may be connected by a common cause. If symptoms have gotten worse over time, they could be related to a rare genetic disease called X-linked hypophosphatemia, or XLH.
Check out this video to see if your symptoms could add up to XLH.
SYMPTOMS CAN DIFFER FOR EVERYONE AND MAY VARY AMONG CHILDREN AND ADULTS
SYMPTOMS CAN DIFFER FOR EVERYONE AND MAY VARY AMONG CHILDREN AND ADULTS
BOWED
LEGS
SHORT
STATURE
BONE AND
JOINT PAIN
RECURRING
FRACTURES
ONGOING
DENTAL ISSUES
XLH is a hereditary, progressive, and lifelong disease that affects thousands of children and adults. In fact, up to 16,000 people in the United States are estimated to have XLH.
People with XLH can lose too much phosphorus through their urine, causing low levels of phosphorus in their blood. This is called hypophosphatemia. It can seriously affect areas of the body such as bones, muscles, and teeth in children and adults.
Watch this video to help you and your family learn more about XLH and see what happens inside the body.
XLH CAN RUN IN YOUR FAMILY*
XLH is “X-linked” because it can only be passed on to children through an X chromosome.
Take a look at how XLH may affect more than just you or your family member.
If a father has XLH,
all his daughters and
no sons will have XLH.
If a mother has XLH,
each of her children (boy or girl)
has a 50% chance of inheriting XLH.
*Children can also be born with XLH, even if there’s no family history of the disease.
This is called a spontaneous case and it can happen for up to 30% of people who have XLH.
It’s important to find doctors who are knowledgeable about XLH and can help identify and manage it. The earlier you or your child is diagnosed, the earlier management of this progressive disease can begin.
By staying informed and actively engaging with your healthcare team, you can better understand how to manage XLH and become an advocate for yourself or your family member.
Watch Melissa and Gini share the importance of being persistent to find the right doctors.
XLH may be rare, but it shouldn’t be isolating. There are communities of people living with this condition, including parents,
who are telling their stories of how they have learned to manage XLH.
“You just have to check in with your own body…
I think the point should be to have a good life.”
“Try not to focus on
having a disease…
and live your life to the fullest.”
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