Managing XLH
Alejandro with his mother, Lily, living with XLH
The right team of physicians and healthcare 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 healthcare 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 healthcare team is very important. You have to feel comfortable.”
—Gini, adult with XLH
Find an XLH specialist near you
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 abnormalities, often through surgeries
- To improve physical function through physical therapy
Get some tips and support for caring for and living with someone with XLH
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 abnormalities and fractures through surgery
- To improve bone and dental health
Monitor your XLH and learn how symptoms progress over time
XLH is a progressive and lifelong disease with symptoms changing over time. Understanding the progression of XLH can help you or your loved one prepare for the future.
- Know that XLH symptoms vary between children and adults
- Understand that you may experience changes in your physical abilities as you get older
- Speak with your or your child’s doctor for specific recommendations regarding which laboratory tests are needed to track XLH severity
LEARN MORE ABOUT XLH PROGRESSION AND HOW YOU CAN MONITOR SYMPTOMS IN THE XLH MONITORING GUIDE
Transitioning in care for young adults with XLH
XLH is a lifelong condition. 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 condition and encouraging them to take care of themselves.
Learn about some strategies to help your child with the transition
GENETIC COUNSELING
Getting diagnosed with a genetic disorder like XLH can be overwhelming. Genetic counselors can help you manage your or your child’s condition, identify family members at risk, connect you with patient support organizations, and teach you about existing protections against insurance and employment discrimination.
