Recommended Language for Families Communicating Potential Risk of COVID-19
Many families have asked PPMD if we have recommended language they could use to better explain Duchenne and the potential risk COVID-19 could have on their child and family. According to WHO, maintaining social distancing and self-isolation practices are vital in the prevention of COVID-19. Recommendations about shelter-in-place or stay-at-home orders may be different depending on where you live, but good infection prevention practices are key, including staying home from work and school to minimize exposure. We recognize that this may not always be possible, and recommendations may be dependent on where you live and the specific risks to the person living with Duchenne for whom you care. We have provided for your information, the below language you may wish to use in the discussion of these issues with others:
Duchenne muscular dystrophy is a genetic disorder characterized by the progressive loss of muscle. It is a multi-systemic condition, affecting many parts of the body, which results in deterioration of the skeletal, cardiac, and pulmonary muscles. Duchenne affects approximately 1 out of every 5,000 live male births. About 20,000 children are diagnosed with Duchenne globally each year. There is currently no cure for Duchenne, but there are some treatments available.
Why People with Duchenne are Higher Risk
People with Duchenne are considered to be at higher risk for complications from COVID-19 according to the CDC. This is due in part to the standard of care, which includes use of corticosteroids to slow disease progression. Corticosteroids are known to suppress the immune system, making people who take them less able to fight off infections. As people with Duchenne also have heart and lung problems, this further increases their risk, making them more prone to complications requiring invasive ventilatory support, prolonged inpatient hospitalization, or even death.
How to Protect People with Duchenne
To best protect people with Duchenne from COVID-19, direct caregivers should minimize their exposure. This may mean working from home, isolating the person and their family at home, or use of extreme social distancing and other measures.