As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors.
- For most individuals with FSHD, the risk of serious illness from COVID-19 infection is the same as the general population. The CDC and MDA websites provide detailed information about who is most at risk and how to avoid getting infected.
- In general, older adults (over 50 years of age), especially those with chronic illnesses like heart disease, diabetes, taking medications that suppress the immune system and those with lung disease have the highest risk of serious illness.
- About 10-25% of individuals with FSHD develop what is known as restrictive pulmonary disease due to weakness of the chest wall muscles. They are probably at slightly higher risk because of issues with a weakened cough in order to clear secretions. Although COVID-19 doesn’t seem to be associated with a lot of secretions, secondary pneumonia is common and could be a problem.
- If you have FSHD-associated respiratory problems, you should consider yourself at higher risk for serious illness regardless of your age and should take extra precautions to avoid getting infected. This applies to anyone who is using nighttime ventilation or is at or below 50 percent of the predicted value for forced vital capacity (FVC), maximal inspiratory pressure, and peak cough flow.
- If you get sick, inform your care providers that you have restrictive pulmonary disease and should not receive oxygenation without ventilation (e.g. BiPap or NVS). This can cause you to retain carbon dioxide and stop breathing.
- If you need to go to the emergency department, take your BiPAP with you. Whether your device can be used in the hospital will vary according to hospital policy. BiPAP can generate aerosol droplets and so care needs to be taken to avoid viral transmission. However, if providers are wearing protective clothing, this may not be an issue.
- Alternatively, use a ventilator with active circuits with exhalation valves that can have filters attached to them.
- Download and carry our Medic Alert Card to warn emergency medical care providers that you have FSHD.
How the FSHD Society is responding
Our community’s health and well-being are our highest priority. While we must maintain social distance, it’s important that we all stay connected. To support our community, we have launched our FSHD Society Sequester Camp, with weekly webinars, radio shows, story time, and resources to help. Check it out!
Due to the risks posed by COVID-19, particularly to people with FSHD, we have decided to postpone the April 21 Voice of the Patient Forum. The meeting remains vitally important to us, and so we are working to reschedule it.
If you have already registered to attend in-person, you will receive priority in re-registering once we have set a new date. Please contact the Marriott hotel directly to cancel your room reservation. It’s our understanding that the major airlines are allowing flights to be cancelled and rebooked without incurring the usual cancellation and change fees.