Emily Malcolm,  —

If you have a rare genetic disease like X-linked hypophosphatemia (XLH), and are considering whether to have a baby, you may wonder if your children will inherit the progressive disorder. You and your partner should discuss this possibility with your doctor, who may recommend genetic testing. What causes…

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 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…

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…

X-linked hypophosphatemia (XLH) is a rare genetic disease characterized by low phosphate levels in the blood. As a result, patients’ bones may be weak and fracture easily. The severity of the symptoms of XLH varies greatly from patient to patient. What are pseudofractures? Pseudofractures look a lot…

X-linked hypophosphatemia (XLH) is a rare genetic disease characterized by low levels of phosphate in the blood. Because XLH is so rare, and symptoms can vary so much among patients, it’s very hard to predict what medications will be most effective for any one person, and how…

Effectively managing treatment and care for a rare disease such as X-linked hypophosphatemia (XLH) can be challenging. So, when you go to your doctor it is important to be prepared for a meaningful dialogue about your condition. Here are five tips for making the most of your doctor’s visit: Make a list…