Recreational Therapy for Fabry Disease Patients

Recreational Therapy for Fabry Disease Patients
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Living with a chronic disorder such as Fabry disease can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your psychological and physical well-being.

About Fabry disease

Fabry disease is a progressive rare genetic disease that results from the abnormal buildup of a type of fat called globotriaosylceramide (Gb3 or GL-3) inside cells and tissues. Gb3 accumulation can cause a wide range of symptoms including chronic pain, hearing problems, kidney damage, gastrointestinal and cardiac issues, and problems with eyesight.

About recreational therapy

Recreational therapy, sometimes called therapeutic recreation, uses recreation and other 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 functioning in order to help patients fully participate in life.

What does it involve?

A certified therapeutic recreation specialist (CTRS) provides and directly supervises the service. He or she helps assess your needs and develops a program especially for you.

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

Techniques in recreational therapy may include arts and crafts, animals, sports, games, dance and movement, drama, music, and community outings.

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

How recreational therapy can help Fabry patients

Fabry disease can cause problems at home, school, work, and in everyday life. Merely keeping up with medical appointments can be very stressful and deleterious to patients’ physical and mental health.

That’s why it’s important to your overall health and life quality to maintain social engagement. That’s where recreational therapy can help.

Sometimes, people with rare diseases tend to avoid social activities because they feel others cannot understand their condition, usually because they’ve never heard of it. There’s also a need to constantly explain symptoms.

A study showed that pain, negative health perceptions, and certain coping styles for dealing with daily stressors are all linked to a greater incidence of depression among people with Fabry disease. Recreational therapy can help you gain the confidence to make and maintain acquaintances.

Impaired exercise capacity may limit your participation in some recreational techniques such as dance and movement, but your therapist can produce a plan that’s right for you. It may help you develop a passion or interest that you can share with others.

 

Last updated: Dec. 11, 2020

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Fabry Disease News 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. 

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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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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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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