Mindfulness for Fabry Disease Patients

It can be very stressful — and dispiriting — to live with a rare chronic disorder such as Fabry disease, which leads to symptoms ranging from kidney and heart disease to eye and stomach problems. One way to help cope is through a practice called mindfulness.

What is mindfulness?

Mindfulness is the practice of being constantly aware of your thoughts, feelings, bodily sensations, and the surrounding environment. Rather than rehashing the past or imagining the future, mindfulness means tuning in to what you are sensing at the moment.

While you can’t always change your circumstances, you can choose your response to them. By being in touch with present thoughts, sensations, and emotions, you can gain a different perception of what you’re going through. This is what the Institute for Mindfulness-Based Approaches, which offers a stress-reduction program based on intensive mindfulness training techniques.

How can mindfulness help me?

While there are no studies specifically about mindfulness and Fabry disease, an investigation involving people with other chronic disorders showed that mindfulness can be beneficial to patients’ mental health and outcomes.

A systematic review of studies that focused on patients with a variety of chronic illnesses also indicated that mindfulness-based stress reduction (MBSR) — a meditation therapy originally designed for stress management — improved their overall state, helping them to deal with a broad range of clinical problems.

Also, a German exploratory study of 21 participants with chronic physical, psychologic, or psychosomatic illnesses who participated in an eight-week meditation-based program in mindfulness found that the program resulted in effective and lasting symptomatic results, and increased satisfaction with life.

Examples of structured mindfulness

Examples of structured mindfulness include body scan meditation, breathing meditation, and walking meditation.

Body scan meditation

Lie on your back with your legs extended and arms at your sides, palms facing up. Focus your attention slowly and deliberately on each part of your body, in order, moving from toe to head or head to toe. Be aware of any sensations, emotions, or thoughts associated with each part of your body.

Sitting meditation

Sit comfortably with your back straight, feet flat on the floor and hands in your lap. Breathing through your nose, focus on your breath moving in and out of your body. If physical sensations or thoughts interrupt your meditation, note the experience and then return your focus to your breath.

Walking meditation

Find a quiet place 10 to 20 feet (three to six meters) in length, and begin to walk slowly. Focus on the experience of walking, being aware of the sensations of standing, and the subtle movements that keep your balance. When you reach the end of your path, turn and continue walking, maintaining awareness of your sensations.

How can I practice mindfulness?

There also are simpler ways to practice mindfulness. These include:

• Paying attention: Try to take the time to experience your environment using all your senses — touch, sound, sight, smell, and taste.
• Living in the moment: Try to intentionally bring open, accepting, and discerning attention to everything you do.
• Accepting yourself: Treat yourself the way you would treat a good friend.
• Focusing on your breathing: When you have negative thoughts, try to sit down, take a deep breath, and close your eyes. Focus on your breath as it moves in and out of your body. Sitting and breathing for even a minute can help.

Last updated: Aug. 14, 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