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Managing xlh

Managing xlh

Managing XLH

Emily and her daughter Isla
Both living with XLH

The symptoms of XLH can change over time

Because XLH is a progressive condition, it’s important to start managing it as soon as possible. Even if your symptoms seem mild, they will likely change and can worsen over time. Your healthcare team will work with you to come up with a combination of XLH management options that work best for you.

Managing XLH in children

As soon as XLH is diagnosed, the next step will be to discuss management options and goals for your child with your healthcare team.
Close up of toddler Isla's legs

Management goals

If your child has XLH, their doctor may go over some goals for treatment:
  • Getting their phosphorus level into a normal range to minimize symptoms
  • Treating rickets
  • Addressing growth issues

Treatment options

Possible treatment options that can help manage some symptoms of XLH:
  • Medications and supplements
  • Surgery to help correct bowing of legs

Please talk to your child's doctor to learn more about what is best for them.

Managing XLH in adults

As soon as XLH is diagnosed, the next step will be to discuss management options and goals with your healthcare team.
Legs of adult wearing jeans walking on a boardwalk

Management goals

If you are an adult who has XLH, your doctor may go over some goals for treatment:
  • Getting your phosphorus level into a normal range to minimize symptoms
  • Treating osteomalacia
  • Treating and preventing pseudofractures and fractures
  • Relieving bone pain and joint stiffness

Treatment options

Possible treatment options that can help manage some symptoms of XLH:
  • Medications and supplements
  • Corrective bone surgeries

Please talk to your doctor to learn more about what is best for you.

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