An eight-week online mindfulness series for people with Fabry disease – aimed at relieving pain, reducing stress and improving overall well-being – will open on September 29 and are currently recruiting participants.
The Zoom series, which runs through November 24, is presented by the MPS Society, which provides support to people in the UK affected by mucopolysaccharide diseases, Fabry and related disorders. As places are limited, those interested are invited to register as soon as possible.
“Join one of our popular 8-week online mindfulness courses for those with Fabry,” the company announcement reads. “Learn how to live well with the pain, fatigue and other long-term symptoms of Fabry.”
In addition to September 29, classes will run Wednesdays from 10 a.m. to noon (UK) on October 6, 13, 20 and November 3, 10, 17 and 24. Participants will need a Zoom compatible computer, tablet or other device.
There will be 6 to 14 people in each class. Classes will teach patients to live well despite the pain, fatigue and other symptoms of Fabry; mindfulness and compassion techniques for calm, pain relief and general happiness; and advice on how to manage chronic pain to improve quality of life.
The series will also include a group discussion and teaching, as well as a guided mindfulness meditation.
Eye problems, distinctive facial features, and episodes of severe pain and tingling in the hands and feet are the main symptoms associated with Fabry, a genetic disease caused by the toxic build-up of fatty molecules in small blood vessels and most bodily tissues.
Additionally, while not a classic Fabry symptom, chronic fatigue is common in patients. In a study of 49 patients, 48% reported chronic fatigue and daytime sleepiness as the predominant symptoms.
Mindfulness is the practice of always being aware of your thoughts, feelings, bodily sensations, and the environment around you. Instead of rehashing the past or imagining the future, mindfulness means focusing on how you feel in the present.
Examples of structured mindfulness are body scan meditation and breath meditation.
There are no known studies on mindfulness and Fabry. However, a study of people with other chronic disorders indicated that mindfulness can have a positive effect on mental health and patient outcomes.
Additionally, a systematic review of studies focused on patients with a multitude of chronic conditions found that mindfulness-based stress reduction improved participants’ overall condition, helping them cope with a wide range of conditions. clinical problems.