Ways to support children with XLH
After diagnosis, creating a treatment and management plan for your child’s X-linked hypophosphatemia (XLH) is an important next step to take with your healthcare team. Ongoing care can help your child handle daily challenges.
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Pain from rickets and osteomalacia: Ask your child’s doctor whether pain medication or a pain specialist could help, and consider physical therapy to build strength, improve stability, and manage pain.
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Dental issues or infections: Tell your child’s dentist about their XLH and ask when to begin X-rays. Schedule checkups every six months and share a Dental Coverage Letter if insurance is a concern.
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School conversations: Encourage open conversations about school and listen with empathy; connect with teachers and counselors to help them understand XLH and support your child.
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Emotional support: Be mindful that XLH may be hard to talk about. Validate your child’s feelings and seek professional support when needed.
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Understanding their care: Encourage your child to ask questions at doctor visits, keep notes, and understand their management plan as they get older.
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Staying connected with community: Connect with the XLH community to meet families and people with similar experiences for extra support.
Ways to support TeEns with XLH
As teens with XLH become adults, their care may move from a pediatric provider to an adult specialist. Starting early and taking small steps can help make this transition easier for everyone.
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Planning for adult care: Start planning around age 12 and work as a team to transition to adult care from age 18 into their early 20s.
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Finding the right medical support: Help your teen find an adult provider and navigate changes in insurance and coverage.
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Understanding XLH and how to manage it: Teach your teen about how XLH impacts the body, and practice skills like scheduling appointments and talking with providers about treatment and care options.
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Managing stress: Help your teen learn healthy ways to cope with stress, like journaling or deep breathing.
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Being open about their story: Encourage your teen to share their XLH story and connect with others for support.
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Educational support: If your teen is going to college, encourage them to explore support options and learn how to access them.
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School/life balance: Remind your teen they’ll need to balance classes and their personal life, while keeping up with their treatment and management plan.
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School accommodations: Help your teen discuss classroom modifications or support services with their school, and organize any required medical records and paperwork.
Help your teen prepare for their future with the Transition of Care Brochure.
Ways to support adults with XLH
XLH is a lifelong, progressive condition, which means it can change over time and symptoms may build as you get older. It’s important to stay on top of your care.
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Pain from osteomalacia: Physical and occupational therapy can help support mobility and daily activities, and gentle exercise like yoga may help with symptoms like bone and joint pain. Always talk to your doctor before starting a new routine.
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Dental issues or infections: See your dentist regularly, get X-rays as recommended, and follow their advice on brushing, flossing, and eating a healthy diet.
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Fatigue: Track your energy and take breaks as needed. Follow your doctor's advice for maintaining a consistent sleep routine.
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Fractures and pseudofractures: Seek medical attention immediately if you think you have a fracture of any kind.
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Difficulty hearing: If you notice issues, including ringing in your ears or dizziness, talk to your doctor about hearing tests.
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Workplace rights: Know your workplace rights and the laws that protect them.
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Health insurance: Understand and review your health insurance options.
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Work accommodations: If you choose to disclose your condition to your employer, you can request accommodations to help you do your job successfully.
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Expert advice: Seek advice from an XLH specialist if you need help navigating the workplace.
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XLH inheritance: Be sure you understand how XLH can be passed down. Download the XLH Family Inheritance Guide to get started.
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Help from a professional: Talk with a genetic counselor to understand inheritance patterns and reproductive options.
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Pregnancy: If you’re a woman with XLH considering pregnancy, talk with an obstetrician about potential health risks.
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What’s best for you: Make the choices that are best for you—whether, when, or how to start a family is up to you.
The information provided here is intended for informational and educational purposes only. Remember to always speak to your healthcare professional for medical guidance.
COMM-US-RDS-1000 August 2026