Support for adults with XLH
Jean, an XLH patient
Jean, an XLH patient
Living with a chronic disease can be challenging, but that doesn’t mean you can’t live a fulfilling life. By having a lot of information about XLH, and staying informed, you can gain a better understanding of how to manage your disease.
Getting treatment for your XLH is a step toward managing XLH. But, recognizing that XLH is a lifelong disease can help you to think ahead and prepare for the day-to-day challenges of XLH.
Sometimes, even with treatment, some of the physical symptoms of XLH continue to manifest and may require additional ways of managing them. For the following physical symptoms, consider these additional strategies:
Adults with XLH may experience bone and joint pain as well as stiffness as a result of their ongoing osteomalacia.
Ask your doctor about the use of pain medications as part of your regular pain relief
Physical therapy may help relieve pain and stiffness by improving the stability and flexibility of joints and muscles
Occupational therapy may also be helpful in providing adults with new ways of managing everyday tasks and improving your ability to perform your daily activities
Staying active and exercises like yoga may help relieve stiffness. Consult with your doctor before doing any physical activity
Tooth abscesses or tooth infections may appear without any cavities or any hints of trauma, which is why they are called “spontaneous abscesses”. These abscesses may manifest as pain in the tooth or gum area. They may be accompanied by redness and swelling.
To help ensure that these infections do not become serious, set up regular dental check-ups with your dentist
Be diligent about brushing and flossing
Try to avoid sugary snacks and foods
Osteomalacia in adults with XLH can lead to fractures and pseudofractures, which may result from bearing weight while doing everyday activities, such as walking. Bones in the lower extremities such as hips, legs, and feet, are prone to these “low-trauma” fractures. Some of the symptoms of fractures and pseudofractures are:
Pain that improves when you rest
Pain that gets worse as you perform daily activities
Swelling, tenderness, and bruising
If you suspect that you may have fractures or pseudofractures, seek medical attention immediately.
Tiny bones in the ears—just like the rest of the bones in the body – can be affected in adults with XLH.
If you experience any difficulties with hearing such as ringing in the ears as well as dizziness (vertigo), seek the help of your doctor
Jason, living with XLH
Adults with XLH commonly experience fatigue, associated with feeling tired and drowsy. Fatigue can get in the way of work and overall productivity. Here are a few tips to help you manage fatigue:
Having a rare disease can feel isolating. Cultivating your relationship with family, friends, coworkers, and other people who may be able to offer support can help you stay connected.