New publication illuminates the effects of the COVID-19 pandemic on people with muscular dystrophy

A new publication examines the social and health impacts of the COVID-19 pandemic and the associated social guidelines on people living with muscular dystrophies. The authors developed a COVID-19 Impact Survey for adults living with facioscapulohumeral muscular dystrophy, myotonic dystrophy, and limb-girdle muscular dystrophy. The survey was sent to participants enrolled in national registries or with patient advocacy groups, including those in the LGMD2A/R1 Global Patient Registry.

Challenges and Stress During the Pandemic

Among survey respondents, compliance with local social distancing guidelines was high. People reported challenges in social distancing and obtaining essentials. Responses indicated that many participants are experiencing moderate stress, which they manage by resting and sleeping, exercising, meditation, hobbies, interactions with family and friends, or through religion/faith.

Impact on Health and Access to Healthcare

At the time of survey response (May 2020), most individuals reported that their muscle disease did not change while a third reported a slight worsening of the disease. Unsurprisingly, most individuals reported canceled or rescheduled health care visits due to the pandemic. Forty-two percent of participants reported that they had participated in a telemedicine appointment. While responses indicated many were satisfied with their telemedicine appointment, the majority preferred in-person visits.

The full text of the article can be accessed here.

The results of this study will help clinicians, researchers, and patient advocates understand the impact of the pandemic and social guidelines on the lives of people living with muscular dystrophy, and can guide care and future interventions.

Coalition to Cure Calpain 3 thanks the members of the LGMD2A community who took the time to participate in the survey. You helped make our voices heard!