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Wellness

Home / FSHD University / Wellness

For many people living with FSHD, the anxiety and stress of coping with disability, pain, fatigue, and interactions with others can be just as debilitating as the loss of muscle strength and function. People must deal with feelings of grief, anger, frustration, and hopelessness. FSHD takes a toll on mental health, but therapy, coaching, mindfulness, and other techniques can make a difference. Circumstances can't always be changed, but we can transform how we cope with them through knowledge, practice, and a community of support. Our "department of mental health" offers monthly Zoom meetings, webinars, articles, and resources to help you move toward greater well-being and happiness.

Resources to help you find a therapist

  • American Counseling Association directory of therapists
  • Rareminds for the UK, a mental health service for people with rare diseases
  • Mindfulness resources from Jennifer Egert, PhD
  • Innopsych - a searchable directory of therapists of color
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No one should have to walk the FSHD journey alone and there can be great strength in shared experiences. Come to the Gathering Place - a collection of groups that bring together patients, family members, and friends who are walking similar paths.

Groups gather each month to share experiences, exchange ideas, offer support, and gain insights. Find the group - or groups - that appeal to you and fit where you are in your FSHD journey, then join the group and meet us online each month.

Visit the Gathering Place to Learn More

Mental health and wellness videos

  • Young Professionals, September 2023, Genetic Counseling & Family Planning with Julie Cohen

    Young Professionals, September 2023, Genetic Counseling & Family Planning with Julie Cohen

  • Feeling Fit with FSHD: Rita Lynn, Part 2, August 2023

    Feeling Fit with FSHD: Rita Lynn, Part 2, August 2023

  • Young Professionals, August 2023, FSHD and Relationships with Jenny and Tony Teel

    Young Professionals, August 2023, FSHD and Relationships with Jenny and Tony Teel

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Mental health and wellness blog posts

Haviva Ner-David as teen

Talking to my 16-year-old self

By jkinoshita | December 13, 2021

by Haviva Ner-David The last line of my author bio reads: “Rabbi Haviva Ner-David lives with a degenerative genetic form of muscular dystrophy called FSHD, which has been one of… Read More »

Women on Wellness – Clothing Hacks and more

By jkinoshita | November 9, 2021

The “Women on Wellness” Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with… Read More »

Women on Wellness (monthly Zoom)

By jkinoshita | September 27, 2021

By popular demand, we are launching our Women on Wellness Zoom support group starting on Wednesday, October 6. This meeting will take place on the first Wednesday of each month… Read More »

David Younger, FSHD University

David Younger on managing difficult emotions

By jkinoshita | April 26, 2021

“I no longer live at the mercy of my mind,” says David Younger, PhD, a psychologist who has lived with the physical decline that comes with his diagnosis of facioscapulohumeral… Read More »

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