Coronavirus & Myotonic Dystrophy

MDF is concerned that the new coronavirus (COVID-19) may have a disproportionate impact on people and families affected by myotonic dystrophy so we are reaching out to share resources and ensure you are informed.

At the present time, the coronavirus in the U.S. is concentrated in specific areas and communities. Due to regional differences, and because myotonic dystrophy is variable from one person to the next, it is difficult to make recommendations across the board for everyone. However, we do know that many individuals affected by myotonic dystrophy fall within the category of “People at Risk for Serious Illness from COVID-19”, as defined by the Centers for Disease Control (CDC). For example, those with heart problems, weakness of breathing muscles, weak cough, or diabetes are considered at higher risk of illness from this virus.

Depending on your personal health and the situation in your local area, here are some points to keep in mind:

• Check the CDC recommendations for People at Risk for Serious Illness from COVID-19. Take reasonable precautions that the CDC recommends: keep space between yourself and others, wash your hands, avoid crowds, restrict travel to the extent that you can, and stay off cruises. This may seem simple and common sense, but these are the most important steps you can take now.
• Although reports from China and Italy indicate that children are less likely to develop severe illness from coronavirus than older adults, it would not be safe to assume that this is true for children who have myotonic dystrophy – we don’t yet know.
• For routine health maintenance for myotonic dystrophy, such as annual EKGs, check with your physician, but in many cases this can be safely deferred for a few months, unless you are having active cardiac symptoms or problems that are currently being evaluated.
• If telemedicine resources are available to you, this may be a good option for questions about COVID-19. It is challenging to predict whether you will connect to someone who is familiar with myotonic dystrophy.

General information about COVID-19, including links to what is happening in each state, can be found on the Centers for Disease Control website, which will be updated as new information becomes available. Please contact your clinician if you begin to feel ill.

In health and unity,

The MDF Board of Directors, staff, and medical advisory panel

For questions about MDF, please contact Tanya Stevenson, EdD, MPH, at 415-800-7777.