Health Insights

Tips for Staying Motivated with a Chronic Disease Like XLH

When you’re living with a rare and progressive disorder like X-linked hypophosphatemia (XLH), with its myriad of potential symptoms, you may find it difficult to stay motivated. Here are some tips that may help spur you on. Stick to when you’re most productive To have a productive day, you…

How to Deal with Pseudofractures in XLH

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…

What Is the XLH Disease Monitoring Program?

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…

Individualized Education Program for Children with XLH

X-linked hypophosphatemia (XLH) is a progressive inherited disorder that can affect children‘s proper bone development and result in fractures and other complications, including delayed growth and short stature. Your child may face difficulties at school because of his or her outward appearance. To reduce the disease’s impact…

Tips for XLH Caregivers

A person who has a rare genetic disorder such as X-linked hypophosphatemia (XLH) may require frequent help from a caregiver to accomplish everyday tasks. As a caregiver, you often may be stretched to the limit meeting the needs of the patient or loved one. XLH can pose many challenges for…

Support Networks for Families Affected by XLH

Building and maintaining a good support network — of friends, family, peers, and co-workers — is important to physical and mental health, and a strong source of resilience in times of stress and anxiety, or feelings of depression. Studies are yet to specifically address how support networks help those…

Developing a Treatment Plan for XLH

X-linked hypophosphatemia (XLH) is a rare, progressive genetic disorder characterized by rickets-like symptoms such as osteomalacia (soft and weak bones), early osteoarthritis, fractures, pain, dental abscesses (buildup of pus in the teeth), and stunted growth. The disease affects multiple organs, such as the bones, muscles, and…

Dietary Concerns in People With XLH

X-linked hypophosphatemia (XLH) is a rare genetic disorder characterized by low levels of phosphate in the blood. Since phosphate is an important mineral required for proper bone and tooth development, XLH patients develop rickets-like symptoms, such as osteomalacia (soft and weak bones), early osteoarthritis, fractures, pain, …

How to Prepare for Physiotherapy When You Have XLH

Physiotherapy, or physical therapy, is among the treatment approaches that can help if you have X-linked hypophosphatemia (XLH), a rare genetic disease characterized by weak and fragile bones, among other symptoms. Here are some tips to help you get ready for a physiotherapy appointment and some information…