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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

  • Young Professionals, March 2023, with Disability Law Expert Howard Chabner

    Young Professionals, March 2023, with Disability Law Expert Howard Chabner

  • 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

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Mental health and wellness blog posts

Managing Fatigue

By jkinoshita | May 22, 2023

Our May Women on Wellness group discussion focused on a topic that is always a big concern, fatigue. This is a group of women who meet monthly on Zoom and… Read More »

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What to do in a crisis

By jkinoshita | April 11, 2023

Mental health crises are prevalent in our community. Help is out there A diagnosis of FSHD poses life-long challenges. Individuals live with an undercurrent of anxiety about how their symptoms… Read More »

Pain management in FSHD

By jkinoshita | May 12, 2022

The science and psychology of managing chronic pain   Chronic pain is one of the more difficult aspects of living with FSHD, and also one of the most challenging to… Read More »

Everyday Mindfulness

By jkinoshita | December 20, 2021

At our December 13 Wellness Hour, Jennifer Egert led a short session on mindfulness in which she asked people to focus their awareness on their body sitting. Afterward, there was… Read More »

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