If you have a family history of X-linked hypophosphatemia (XLH) and are planning to start a family, you may want to consider prenatal genetic diagnosis. What is prenatal genetic diagnosis? Prenatal genetic diagnosis is a process to determine, before your baby is born, whether it will have a…
If you are a woman with X-linked hypophosphatemia (XLH), you may wonder if you can become pregnant, and what the risks may be for you and your baby. Can patients with XLH become pregnant? Women with XLH can become pregnant, and there is no indication so far that the…
Genetic testing looks for changes in a person’s genome, or complete set of DNA. These changes might indicate the presence of a genetic disease like X-linked hypophosphatemia (XLH). What causes XLH? Mutations in a gene called PHEX are known to cause XLH. This gene encodes for an…
If you or your child have X-linked hypophosphatemia (XLH), you might want to consider enrolling in the online disease-monitoring program BeyondXLH. Because XLH is so rare, and its symptoms can vary greatly, it’s difficult to predict how the disease will progress, and what treatments will be best…
If you have a rare disease like X-linked hypophosphatemia (XLH), traveling safely can be challenging. Here are a few tips to get you started in planning your next trip for work or fun: Do This When Traveling Do plan extra time at train stations, bus terminals, and airports.
Patients with X-linked hypophosphatemia (XLH) commonly report symptoms of fatigue, pain and stiffness. Feeling fatigued can make work, school, and daily tasks more challenging to manage. Here are some tips for managing fatigue: Keep track of your energy levels Keeping a log of your symptoms throughout the…
There currently is no cure for X-linked hypophosphatemia (XLH) and not many options for treating the disease’s symptoms. That’s why clinical trials are so important as scientists work to develop new and better therapies. What are clinical trials? Clinical trials are at the heart of all medical advances.
Caring for a child with X-linked hypophosphatemia (XLH) can be overwhelming. Worrying about what might happen if your child outlives you, or you become disabled, can be stressful. Here are some suggestions to help you start to plan for the future. Create a plan for the future Thinking about…
Caring for a child who has X-linked hypophosphatemia (XLH) can be draining. You’re dealing with a rare disease characterized by weakened bones and teeth, possible fractures and dental abscesses, muscle weakness and pain. Having to constantly try to explain what you’re going through to friends and associates can…
Living with a chronic disease, such as X-linked hypophosphatemia (XLH), can be very stressful. You may feel as if you’ve lost control of your life, a major source of anxiety. Some people with XLH speak of experiencing considerable fatigue, stiffness, and chronic pain. Adults with XLH also report a fear of…
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