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Managing xlh

Managing xlh

Strategies and support

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Support for caregivers of children

Getting treatment for your child is an important step toward managing XLH. Even with treatment, some physical symptoms of XLH can persist and may require additional ways of managing them. Recognizing that XLH is a lifelong condition can help you think ahead and prepare for the daily challenges you may be facing.

Pain from rickets and osteomalacia

  • Ask your doctor about the use of pain medications and/or visiting a pain specialist as part of your child’s regular pain management regimen
  • Consider physical therapy, which may help relieve pain by improving the stability of joints and help strengthen the muscles

Dental abscesses or infections

  • Inform your dentist about your child’s condition
  • To help ensure that these infections do not become serious, set up regular dental check-ups
  • You can also help by encouraging your child to brush and floss regularly, as well as avoid sugary snacks
  • If you have insurance coverage concerns about your child's XLH-related dental issues, consider reviewing and sharing this sample dental medical necessity letter with your child's dentist
  • Remember that your child may face challenges at school because of how XLH affects them
  • Encourage your child to speak openly about their school experiences so you can better understand what they are going through
  • Actively listen to your child with an open mind. You play an important role in shaping their experience with XLH
  • Become familiar with your school’s 504 plan and talk to school counselors, staff, and teachers to help them understand XLH. Counselors and teaching staff may be able to provide learning support, encourage participation, and prevent bullying of your child
  • Consider how hard it may be for your child to talk about XLH
  • Acknowledge their feelings about XLH
  • Seek out counseling and professional support to help your child’s emotional well-being
  • Connect with the XLH community to help you find families and people with similar experiences who may offer additional support
  • Prioritize helping your child understand more about XLH and its management requirements as they transition into adulthood. This includes tracking progression and staying on top of treatment
  • Teach them to take part in their care as early as possible so they’ll be more informed and empowered to take care of themselves
  • Encourage your child to ask questions during doctor visits to help them get used to interacting with doctors and hospital staff
  • Ask your child to keep a diary of what the doctor tells them. It’s a great way for them to learn about organization and remember important information
  • Make it fun! Give your child rewards for taking part in their learning

Support for caregivers of adolescents

It is important for adolescents to transition from a pediatrician to an adult healthcare provider to continue their disease management. Preparing far in advance for this situation through gradual steps and conversations will help make sure everyone is ready when it’s time.
  • Transition your child’s care as early as age 12. The goal is to make the change to adult healthcare some time between age 18 and their early 20s
  • Treat the transition as a team effort between your adolescent child, yourself, pediatric specialists, and adult healthcare providers
  • Find the right adult healthcare provider, but don’t forget that it is important for adolescents to be aware of changes in the healthcare system, laws, insurance, and self-care
  • Be sure adolescents understand how the symptoms of XLH may change over time
  • Teach adolescents to effectively communicate with healthcare providers, make a medical appointment, and access their medication
  • Teach adolescents to share their story to help them gain confidence in educating others about XLH and communicating their needs
  • Encourage adolescents to connect with the XLH community to help them find peers with similar experiences who may offer additional support
  • Guide adolescents to find a stress-reducing activity they enjoy and make it part of their regular routine
  • Help adolescents find coping techniques like deep breathing or journaling to help manage stress or anxiety. This can be done with the help of a therapist
  • Be sure adolescents who are interested and able to pursue further education research the support that's available to them and are aware of how to access it
  • Advise adolescents to locate the disabilities office, identify themselves, request accommodations, and provide any required documentation ahead of time
  • Remind adolescents that they will be juggling class, personal, and medication schedules, and that it’s important to stay on track with their disease management plan


Help your child understand how to manage their XLH through the years.


Support for adults

Physical symptoms that are unmanaged in childhood can build up and lead to even more symptoms in adulthood. Sometimes, even with treatment, physical symptoms of XLH can worsen. In these cases, you may need additional ways of managing them.

Bone and joint pain and stiffness

  • Ask your doctor about the use of pain medications and/or visiting a pain specialist as part of your regular pain management regimen
  • Physical therapy may help relieve pain and stiffness by improving the stability and flexibility of joints and muscles
  • Occupational therapy may also be helpful in improving your ability to perform daily activities
  • Staying active and doing exercises like yoga may help relieve stiffness. Consult with your doctor before starting any physical activity

Fractures and pseudofractures

  • If you suspect that you may have fractures or pseudofractures, seek medical attention immediately

Tooth abscesses or tooth infections

  • Set up regular dental check-ups (at least yearly) with your dentist
  • Be diligent about brushing and flossing, and try to avoid sugary snacks and foods
  • If you have insurance coverage concerns about your XLH-related dental treatment, consider reviewing and sharing this sample dental medical necessity letter with your dentist

Difficulty hearing

  • If you experience any difficulties with hearing, such as ringing in your ears or dizziness (vertigo), seek help from your doctor
  • Note your energy levels throughout the day and keep a record of when you start feeling tired
  • Take breaks as needed to help reenergize your mind and body
  • Stay active. Regular activity in the form of walking, stretching, or yoga can give you energy. Consult with your doctor first about the types of exercise that may be right for you
  • Establish a sleep routine. A good night’s sleep can help the mind and body
  • Don’t be afraid to ask for expert advice. If you notice that your energy levels remain unchanged, seek help from your doctor
  • Cultivate healthy relationships with family, friends, coworkers, and other people who make you feel good. They may be able to offer support that helps you stay grounded
  • Adopt an open mindset. You are your own best advocate. Find your voice and share your struggles with loved ones
  • Express gratitude for the small victories and focus on the present
  • Connect with the XLH community and other people with similar experiences to find additional support
  • Remember that there are laws in place to protect you and guarantee certain rights in the workplace
  • Familiarize yourself with your rights
  • If you choose to disclose your condition to your employer, you can request accommodations to help you do your job successfully
  • Talk to an expert if you need advice on navigating the workplace
  • Be sure to research and understand your health insurance options
  • Before having a child, be sure you understand how XLH can be passed down in families
  • If you are a woman with XLH considering pregnancy, consult an obstetrician to discuss any potential health risks to you
  • If you decide to have a child, consult a genetic counselor to understand the XLH inheritance pattern and learn about reproductive options
  • Choose what is best for you during family planning. Whether or how you start a family is your choice
The information provided here is intended for informational and educational purposes only, and should not be considered a guarantee of treatment or coverage.
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