Paramedical Care for XLH Patients

Paramedical Care for XLH Patients
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If you or your child has a chronic disease such as X-linked hypophosphatemia (XLH) you may benefit from paramedical treatments. Following is a look at some of the ways such treatments are used to help manage this rare disorder.

What is paramedical treatment?

Paramedical treatments are services provided by professionals who are not in the public health system. They aren’t physicians, dentists, or nurses. Their work focuses on patients’ life quality, and include physiotherapy, occupational therapy, acupuncture, chiropractic services, and massage therapy.

About XLH

XLH is a rare genetic disease characterized by low levels of phosphate in the blood. It can lead to a number of symptoms in children and adults, including bone abnormalities, muscle weakness, and pain. As the disease progresses, patients can have difficulty walking and completing daily tasks.

Patients may be prone to osteomalacia — soft and weak bones — early osteoarthritis, fractures, stunted growth, and dental abscesses.

How paramedical treatment helps

There are multiple paramedical treatment approaches that can help you or your child with XLH.

Physiotherapy

Physiotherapy helps people restore, maintain, and maximize their strength, function, movement, and overall well-being.

The practice is recommended for both children and adults with XLH to help protect their bones and joints by working with the muscles that support them. Patients often have weak or stiff muscles that can cause pain, especially during movement. They also tend to have bowed legs that can be quite painful. Physiotherapy can help with pain relief.

Patients also may require surgery to correct bone deformities and physiotherapy can be useful post-surgery.

Occupational therapy

Occupational therapy can help you or your child surmount barriers you encounter in everyday life while avoiding pain.

You can work with occupational therapists to maintain your quality of life and mobility for as long as possible. The therapists can determine what tasks are difficult for you or your child, and find ways to make these tasks easier through the use of adaptive devices.

Acupuncture, chiropractic, and massage therapy

A recent multi-country European study of 30 patients with XLH, ages 26 and older, explored the burden of the disease, especially in the areas of pain, stiffness, and fatigue.

It found that while most patients used analgesics to cope with pain, some used a wide-range of non-pharmacological methods including acupuncture, which involves the insertion of very thin needles through the skin at strategic points on the body.

The cross-sectional qualitative study also found that chiropractic care was  used sometimes, along with physiotherapy and massage therapy, to ease stiffness in XLH.

Chiropractic focuses on the spine and other areas of the body.

In massage therapy, a trained and certified professional manipulates the soft tissues of the body, using varying degrees of pressure and movement.

 

Last updated: Jan. 15, 2021

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XLH 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.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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