Support for adults with XLH

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.

Become an advocate for XLH

Become an advocate for yourself and for XLH.

Find and cultivate an XLH support system

Find and cultivate the support system you need. See below for strategy and tips.

—Gini, XLH patient

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.

 

Additional ways of managing the physical symptoms 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:

Pain and stiffness

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

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

Fractures & Pseudofractures

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.

Difficulties with hearing

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

Strategies for adults with XLH to help you beat fatigue and stay productive

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:

  • Take note of your energy levels throughout the day. Keep a record of when you start feeling tired
  • Take breaks as needed. It can help re-energize your mind and body
  • Stay active. Believe it or not, regular activity, in the form of walking, stretching or yoga, can give you more energy. Consult with your doctor first about the types of exercise that may be right for you
  • Establish a sleep routine. A good night’s sleep can help reinvigorate the mind and the body
    • Take a relaxing bath or shower before going to bed
    • Put away computers and smartphones to avoid distractions before going to bed

  • Ask for expert advice. If you notice that your energy levels remain unchanged, seek the help of your doctor

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.

  • Adopt a mindset of openness. You are your own best advocate. Find your voice and share your story to help educate loved ones around you
  • Surround yourself with people who make you feel good. Spend time with people who help you feel positive
  • Express gratitude for the small victories and focus on the present
  • Connect with the XLH community and other people with similar experiences

Strategies for emotional wellness to help adults with XLH