A Glimpse into Mental Health in FSHD: Early Insights from BetterLife

by Kayleigh Worek, BetterLife FSHD Manager

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What BetterLife FSHD data is telling us this Mental Health Awareness Month

Living with FSHD can impact more than just muscles. When asking people in our community about the hardest part of living with FSHD, answers often include worry, grief over changing abilities, and uncertainty. In recognition of Mental Health Awareness Month, we want to shine a light on what the FSHD community is telling us about the mental health burden through the data they’ve entered in BetterLife FSHD.

What the data shows

BetterLife FSHD launched publicly in United States in September 2024, and as of April 2026, there are over 700 participants enrolled. Currently, the research team is working on analyzing and publishing data from the first year of the cohort, which includes 497 people (ages 7 to 90+) who shared information about their health. So far, the data are showing how common mental health challenges are:

• • About 1 out of 4 participants self-reported a diagnosis of depression (28.5%)
  • A nearly identical number, 28.3%, self-reported a diagnosis of anxiety
  • 28% of participants are currently taking antidepressant medication

This data indicates that a diagnosis of depression in FSHD is slightly higher (~10 percentage points) than the US national self-reported lifetime rate¹. Depression and anxiety were among the most commonly reported comorbidities after high blood pressure, high cholesterol, and changes in spinal curvature. So, for many people, mental health is as much a part of the FSHD experience as physical symptoms. Our findings in BetterLife mirror what previous research has found ². Other studies have continued to link these mental health symptoms to poorer sleep³, and reduced quality of life⁴, which is why BetterLife collects all these together.

Why this matters

If you have felt anxious about what’s next, grieved changes in your body, or struggled with low mood, you are not alone. FSHD care guidelines recommend that your doctors and care team routinely check in on your mental health. The care guidelines recommend a multidisciplinary approach for mental health and FSHD management which can include evidence-based treatments such as cognitive behavioral therapy (CBT) and medication, as well as non-drug strategies like physical activity, sleep support, and fatigue management, which are closely tied to mood.

It also matters for research. While increased depression and anxiety in FSHD are not new findings, what has been missing is the kind of large, longitudinal, patient-reported data that lets us see how mental health changes over time and how it intersects with pain, fatigue, function, and disease progression. By completing surveys in BetterLife FSHD, you are contributing valuable data that can help researchers better understand the impact and significance of mental health in FSHD.

Your voice makes the data

BetterLife FSHD was designed with the community, for the community. Today, ~73% of registered participants have already engaged with one or more features, and about 9 in 10 say they would recommend BetterLife to a friend or family member with FSHD.

This May, we invite you to take one small step:

• Not yet a participant? Join BetterLife FSHD and help us grow a dataset that reflects the real, whole experience of living with FSHD.
• Already registered? Log in and complete your Research Ready surveys (Demographics, Health History, FSHD Management, FSHD Diagnoses, and FSHD Progression Surveys*).
  *Partial responses leave gaps that limit what researchers can learn. Your fullest picture, across your diagnosis, mobility, and health history, is what gives researchers something they can actually use.

During Mental Health Awareness Month, we’re reminded of how important connection, support, and trusted guidance can be at every stage of the journey. Whether you’re looking for resources, have questions and aren’t sure where to turn, or simply want to connect with someone who understands, a FSHD Navigator is here to help. Reach out to Navigator@FSHDsociety.org today and connect with a real person who is ready to help.

In the U.S., you can call or text 988 to reach the Suicide & Crisis Lifeline, 24/7 if you need immediate support.

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Citations:

1. Lee, B., Wang, Y., Carlson, S. A., Greenlund, K. J., Lu, H., Liu, Y., Croft, J. B., Eke, P. I., Town, M., & Thomas, C. W. (2023). National, State-Level, and County-Level Prevalence Estimates of Adults Aged ≥18 Years Self-Reporting a Lifetime Diagnosis of Depression – United States, 2020. MMWR. Morbidity and mortality weekly report, 72(24), 644–650. https://doi.org/10.15585/mmwr.mm7224a1
2. Kalkman, J. S., Schillings, M. L., Zwarts, M. J., van Engelen, B. G., & Bleijenberg, G. (2007). Psychiatric disorders appear equally in patients with myotonic dystrophy, facioscapulohumeral dystrophy, and hereditary motor and sensory neuropathy type I. Acta neurologica Scandinavica, 115(4), 265–270. https://doi.org/10.1111/j.1600-0404.2006.00737
3. Leclair-Visonneau L, Magot A, Tremblay A, Bruneau X, Péréon Y. Anxiety is responsible for altered sleep quality in Facio-Scapulo-Humeral Muscular Dystrophy (FSHD). Neuromuscular Disorders. 2013;23(9–10):805. (Abstract P.16.5, presented at the 18th International Congress of the World Muscle Society, 2013.)
4. O’Dowd, D. N., Bostock, E. L., Smith, D., Morse, C. I., Orme, P., & Payton, C. J. (2021). Quality of life in adults with muscular dystrophy. Neuromuscular Disorders, 31(4), 328-335. https://doi.org/10.1016/j.nmd.2021.01.007