Managing XLH
Alejandro with his mother, Lily, living with XLH
The right team of physicians and health care providers can make a difference in the care that you or your child receives
A confirmed diagnosis or even a suspicion that you or your child might have XLH can be a scary feeling. That is why finding the right health care team that you can be comfortable with is important. They can provide not just personalized care but also support and disease education. Voice any concerns and ask them questions about XLH to learn as much as you can. During your visit, your doctor may also discuss potential treatment options that can help manage the symptoms of XLH.
“Finding the right health care team is very important. You have to feel comfortable.”
—Gini, XLH patient
To find an XLH specialist near you, ask your primary care physician for a referral to an endocrinologist.
If you are the parent or caregiver of a child with XLH or suspect XLH
Your doctor may explain that goals of treatment for children are:
- To address growth issues
- To correct existing rickets and improve the mineralization of bones and teeth
- To correct leg deformities, often through surgeries
- To improve physical function through physical therapy
If you are an adult who has XLH or suspect XLH
Your doctor may explain that goals of treatment for adults are:
- To reduce the pain, fatigue and stiffness of the bones, muscles and joints through physical therapy and pain management
- To correct leg deformities and fractures through surgery
- To improve bone and dental health
Transitioning in care for young adults with XLH
XLH is a lifelong disease. Children who have XLH will grow up and will need to transition from pediatric to adult health care as young adults. In particular, doctors and parents can guide them by helping them understand their disease and encouraging them to take care of themselves.
Learn about some strategies to help your child with the transition
GENETIC COUNSELLING
Getting diagnosed with a genetic disorder like XLH can be overwhelming. Genetic counsellors can help you manage your or your child’s condition, identify family members at risk, and assist with family planning.
