Recreational Therapy for XLH Patients

Recreational Therapy for XLH Patients
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Living with a chronic disorder such as X-linked hypophosphatemia (XLH) can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your or a family member’s psychological and physical well-being.

About XLH

XLH is a rare genetic disease characterized by low levels of phosphate, an important mineral, 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 with completing daily tasks.

Children may be prone to osteomalacia — soft and weak bones — early osteoarthritis, fractures, stunted growth, and dental abscesses. Adults show many of the XLH symptoms evident in children.

About recreational therapy

Recreational therapy, sometimes called therapeutic recreation, uses activity-based interventions to address the needs of those with chronic illnesses or disabling conditions. The intent is to improve or maintain physical, cognitive, social, and emotional health, so that patients are better able to fully participate in life.

What does it involve?

A certified therapeutic recreation specialist (CTRS) provides and directly supervises the recreational activities. He or she helps to assess the patient’s needs, and develops a personalized program.

Recreational therapy aims to maintain physical, mental, and emotional well-being by easing stress, anxiety, and depression. It also can help to strengthen or recover basic motor and reasoning abilities, build confidence, and keep patients engaged.

Approaches used can include arts and crafts, animals, sports, games, dance and movement, drama, music, and community outings.

A doctor’s referral is usually necessary to begin recreational therapy. If you think this therapy would help you, your spouse, or your child, talk to your doctor or healthcare team about getting a referral to a program that’s convenient.

How can recreational therapy help XLH patients?

XLH is a lifelong condition that can cause problems at home, school, work, and with everyday life. Merely keeping up with medical appointments can be very stressful and damaging to patients’ physical and mental health.

That’s why it’s important to overall health and life quality to keep socially engaged. And that’s where recreational therapy can help.

You may have a tendency to avoid social activities because you feel others cannot understand your condition, usually because they’ve never heard of it. There’s also a need to constantly explain symptoms, including those that aren’t classic, such as problems with hearing in XLH.

Pain and a lesser exercise capacity may also limit your participation in some recreational activities, such as dance and movement. It should be noted that despite these impairments, an active lifestyle, combined with physical and occupational therapy and activities such as yoga and meditation, can help to lower stress levels and strengthen bones and muscles.

The therapist can propose an individualized plan that’s safe, and which may help you develop a passion or interest that can be shared with others.

For children

XLH in children can affect proper bone development, and make bones prone to fractures. Adequate symptom management, and possibly recreational therapy, can ease this disease’s impact on their school performance and self-esteem. Such therapy may also help children in gaining the confidence necessary to make and maintain friendships.

 

Last updated: Dec. 18, 2020

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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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