How to Prepare for Physiotherapy When You Have XLH

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by Emily Malcolm |

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physiotherapy for XLH patients

Physiotherapy, or physical therapy, is among the treatment approaches that can help if you have X-linked hypophosphatemia (XLH), a rare genetic disease characterized by weak and fragile bones, among other symptoms.

Here are some tips to help you get ready for a physiotherapy appointment and some information on what to expect.

How do I prepare for the first session?

Wear comfortable clothing that is easy to move in, and make sure you are well-hydrated and well-rested.

Bring your physiotherapy referral from your primary care physician, as well as your insurance information if your insurance is paying for the session.

What happens during the first session?

Make sure that your physiotherapist is aware that you have XLH before the session starts.

The first session usually starts with a physical examination. The physiotherapist may test your flexibility and range of motion, as well as your physical strength.

The therapist may ask you to go through a few exercises under their supervision and discuss the short- and long-term goals of treatment.

What happens after the session?

You may feel tired after the session, with some achy muscles. If you feel severe aches or pains, notify your physiotherapist and physician.

The physiotherapist will design an exercise program, including exercises you can do at home, to help you maintain muscle strength and improve flexibility and range of motion without putting too much strain on your bones. This type of “homework” is common, but the specifics will differ since the exercises are specific to each patient’s needs.

What about future sessions?

The physiotherapist will ask you if the exercises are helping and whether any are too easy or difficult.

If you have problems completing any of the at-home exercises, inform the physiotherapist, who can then modify your exercise regime accordingly.


Last updated: March 12, 2020


X-Linked Hypophosphatemia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.