XLH SYMPTOMS ARE DIFFERENT FOR EVERYONE
Some people have many symptoms, while others have only a few. Even if your symptoms of XLH look or feel different from someone else’s, it’s important to pay attention to them.
Karabeth
Living with XLH
SYMPTOMS THAT CAN BEGIN EARLY IN LIFE:
Karabeth
Living with XLH
Bones, muscles, and joints
- Weakening of growing bones (rickets)
- Weakening of mature bone (osteomalacia)
- Delayed walking or problems with walking (gait abnormalities)
- Shorter than average height
- Bone and joint pain
- Muscle pain and weakness
- Bowed legs and knock knees
- Unusual shape of the head (craniosynostosis)
Dental
- Dental issues such as abscesses and tooth loss
Other
- Early hearing loss
- Fatigue
SYMPTOMS THAT CAN DEVELOP LATER IN LIFE:
Bones, muscles, and joints
- Joint damage (osteoarthritis)
- Broken bones (fractures) and areas of weakened bone that are not completely broken (pseudofractures)
- Hardening of tissue that connects to bone (enthesopathy)
- Narrowing of spaces in the spine (spinal stenosis)
Dental
- Problems with the gums, like redness, swelling, or infection (periodontitis)
Other
- Hearing loss
Sunindiya and Raquel
Both living with XLH
Download the Doctor Discussion Guide
How is XLH diagnosed?
COMM-US-RDS-0998 August 2026