Adult XLH symptoms

XLH symptoms vary from person to person. However, there are a number of symptoms to look out for that affect many adults with XLH.

Symptoms

The symptoms of XLH vary from person to person, so your experience and the symptoms you have will be particular to you. However, there are a number of symptoms to look out for that affect many adults with XLH. These include:

  • Pseudofractures 
  • Osteoarthritis
  • Joint pain and stiffness
  • Enthesopathy (ligament or tendon problems) 
  • Bone pain 
  • Dental abscesses 
  • Hearing problems
  • Fatigue
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Bone, muscle and joint problems

Osteomalacia and enthesopathy commonly affect adults with XLH. Osteomalacia is when the bones are softer than they should be (‘osteo–’ means bone and ‘malacia’ means softening).

Enthesopathy is a condition involving the area where the ligament attaches to the bone. It could be caused by bone overgrowing where the ligaments attach, or the ligaments themselves might be ‘calcified’ by a build-up of calcium and phosphate. In adulthood, osteomalacia and enthesopathy are mostly associated with pain and restricted movement.

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Pseudofractures

Has your doctor ever told you that you have a ‘pseudofracture’ and you have wondered what it is and how it’s different from a regular fracture? 

On an X-ray a pseudofracture can look like an ordinary fracture, but they are not caused by force in the way that a normal fracture might be. Pseudofractures (sometimes called ‘looser zones’) occur because of poor bone mineralization at sites of stress. So, they are often seen at the top of the thigh bone (femur), forearm (ulna), shoulder blade (scapula) and lower hip (pubic ramus).

Pseudofractures are mostly seen in adults with XLH. They can be very painful and increase the risk of a genuine fracture. Therefore, ideally any adult with evidence of a pseudofracture, or osteomalacia, should be offered treatment by their doctor.

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Fatigue

Fatigue is a common symptom of XLH. For advice on how to help manage your fatigue take a look at ‘Beating fatigue’. 

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Hearing problems

We all have tiny bones in our ears and these, like every other bone in the body, can be affected by XLH. If you, or someone close to you, thinks that your hearing is deteriorating, speak to your healthcare team. Also, watch out for other ear-related symptoms such as dizziness (vertigo) or ringing in the ears (tinnitus).

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Dental problems

As a child, XLH may cause tooth problems such as abscesses and decay – and it may continue to cause similar problems with adult teeth.

If you have pain or any other concerns about your teeth, seek the help and advice of a dentist as soon as possible. Also, check out the sections about dental health and diet

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Low mood

Many people who live with long-term physical health conditions also have mental health problems. For example, in one study as many as three out of five young people with arthritis also felt depressed. There is increasing evidence to suggest that improving a person’s mental health can also help to improve their overall health. So, if you’re finding things tough, you’re not alone – speak to your healthcare team for help.

Seeking medical advice
If you are worried about any aspect of your health, or if your symptoms seem to get quickly and dramatically worse, get in contact with your family doctor or specialist.

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