Health advocacy — that of patients, families, friends, caregivers, and supporters — can help to improve the accessibility and quality of care available to you and those with X-linked hyperphosphatemia (XLH) and other rare diseases. Here is more information about health advocacy, its importance for patients with XLH, and…
X-linked hypophosphatemia (XLH), which results from a loss of phosphate from the kidneys, is known to lead to muscle weakness, muscle pain, and problems with the bones and teeth. But in addition to these common symptoms, patients with XLH also may experience problems directly in their kidneys. The…
Patients with X-linked hypophosphatemia (XLH) may experience sleep problems. Good quality sleep is essential to maintain physical and mental health. It may be helpful to practice sleep hygiene to improve your or your child’s sleep quality. About XLH and sleep disturbances The main reason XLH causes sleep disturbances…
Crysvita (burosumab) is a treatment for people with X-linked hypophosphatemia (XLH) developed by Kyowa Kirin and Ultragenyx. It is the only U.S. Food and Drug Administration-approved treatment for XLH that targets the underlying cause of the progressive inherited disorder. The following are some frequently asked…
If you or your child received a diagnosis of X-linked hypophosphatemia (XLH), you may want to consider enrolling in the XLH Registry. The information collected in this registry helps researchers better understand the disease and its long-term effects on the body, and also pave the way for the development…
X-linked hypophosphatemia (XLH) is a rare genetic disorder caused by mutations in the PHEX gene that results in the loss of phosphate through the kidneys, affecting patients’ bones and teeth. Pain and stiffness are known symptoms, and can be severe enough to disturb sleep. A small survey of…
Living alone with a chronic disease such as X-linked hypophosphatemia (XLH) can be challenging. Here are some points to consider that may help you continue to live well and independently. Know your disease XLH is a rare disease, and clinicians have long focused on its effects on children. Many…
Patients with X-linked hypophosphatemia (XLH) may experience hearing impairment or loss. The following information addresses ways in which XLH may affect hearing and how doctors treat the problems. How hearing works In the process of hearing, the outside portion of the ear (the pinna) collects sound waves…
If you are set to meet with a genetic counselor regarding an X-linked hypophosphatemia (XLH) diagnosis, you probably have a number of questions running through your head but aren’t sure if they cover all you need to address. Here is a list of questions, with background information, that might be…
If you and/or your partner have X-linked hypophosphatemia (XLH), you may worry about the potential risks involved with pregnancy or that you will pass on the disease to your children. However, there are several reproductive options and tests available to help you plan and and make the best decisions…
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