A diagnosis of X-linked hypophosphatemia (XLH) is the start of a lifelong journey. Here is some information about this disease and what you might expect. About XLH XLH is a rare genetic disease characterized by low phosphate levels in the blood. It can lead to a number of…
The symptoms of X-linked hypophosphatemia (XLH) in adults can present real challenges to everyday life. Mindfulness is a technique that may help you manage those challenges. What is mindfulness? Mindfulness is the practice of being constantly aware of your thoughts, feelings, bodily sensations, and the surrounding environment.
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 have a doctor who is knowledgeable about X-linked hypophosphatemia (XLH), you should make the most of your visits, particularly in the weeks and months following your diagnosis. Here’s a guide that may help you start the conversation with your doctor and get answers to your…
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…
If you have a rare genetic disease such as X-linked hypophosphatemia (XLH), the thought of having children with a similar disorder may be stressful. Preimplantation genetic diagnosis (PGD) is a fertility procedure that may allow you to have children without XLH. What is XLH? XLH is a rare…
The symptoms of X-linked hypophosphatemia (XLH), including weak bones and muscles and pain, make life challenging for both patients and their caregivers. Often adding to those difficulties is a lack of understanding from others who know little — or nothing — about this rare genetic disease. Following is…
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…
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