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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
  • 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

  • The Reinventor | A Short Film by Jared Jacobsen

    The Reinventor | A Short Film by Jared Jacobsen

  • Wellness Hour: Staying warm with FSHD

    Wellness Hour: Staying warm with FSHD

  • Resilience and FSHD

    Resilience and FSHD

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Mental health and wellness blog posts

Making the Most of the Holidays

By jkinoshita | December 11, 2020

A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular… Read More »

Walking in water – mindful movement through difficult times

By jkinoshita | November 5, 2020

by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of… Read More »

Jenny and Tony

YouTube series on interabled relationships

By jkinoshita | August 23, 2020

Meet Jenny and Tony, our new FSHD University “adjunct professors.” Jenny and Tony are a married couple who share information and offer encouragement on their YouTube channel in the context… Read More »

FSH Society Radio on Living, Loving, Caring, Sharing

By jkinoshita | April 19, 2019

Join us via Facebook Live on Wednesday, April 24, at 9:00 pm Central / 10:00 pm Eastern time (note change of time) for our conversation with Drs. Ora and Isaac Prilleltensky… Read More »

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