Patients Can Improve Mindfulness With MPS Society Online Series

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by Mary Chapman |

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MPS Society mindfulness series/Fabry Disease News/three people looking at tablet illustration

An eight-week, online mindfulness series for people with Fabry disease — aimed at relieving pain, reducing stress, and improving overall well-being — will open Sept. 29 and is currently enrolling participants.

The Zoom series, which runs through Nov. 24, is presented by the MPS Society, which provides support to people in the United Kingdom affected by mucopolysaccharide diseases, Fabry, and related disorders. Spaces are limited, so those interested are encouraged to register as soon as possible.

“Join one of our popular online 8-week mindfulness courses for those with Fabry,” the society’s announcement states. “Learn how to live well with pain, fatigue, and other long-term symptoms of Fabry.”

In addition to Sept. 29, the courses will be presented Wednesdays from 10 a.m. until noon (in the U.K.) on Oct. 6, 13, and 20, and Nov. 3, 10, 17, and 24. Participants will need a computer, tablet, or other Zoom-compatible device.

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Mindfulness for Fabry Disease Patients

There will be six to 14 people in each class. The courses will teach patients how to live well despite pain, fatigue, and other Fabry symptoms; mindfulness and compassion techniques for calmness, pain relief, and overall happiness; and tips on how to manage chronic pain to improve one’s life quality.

The series also will include a group discussion and teaching, as well as guided mindful meditation.

Eye problems, distinctive facial features, and episodes of severe pain and tingling in the hands and feet are the chief symptoms associated with Fabry, a genetic disorder caused by the toxic accumulation of fatty molecules in small blood vessels and most body tissues.

Also, while not a classic Fabry symptom, chronic fatigue is common among patients. In one study of 49 patients, 48% reported chronic fatigue and daytime sleepiness as prevalent symptoms.

Mindfulness is the practice of being always aware of your thoughts, feelings, bodily sensations, and the surrounding environment. Instead of rehashing the past or imagining the future, mindfulness means focusing on what you’re sensing at the present.

Body scan meditation and breathing meditation are examples of structured mindfulness.

There are no known studies about mindfulness and Fabry. However, a study that included people with other chronic disorders indicated that mindfulness can have a positive effect on patients’ mental health and outcomes.

In addition, a systematic review of studies that centered on patients with a host of chronic conditions found that mindfulness-based stress reduction improved the participants’ general state, helping them to cope with a wide range of clinical issues.