Last updated June 16, 2020.
Please respond by July 31, 2020: An online survey launched by the National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) aims to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families and their caregivers. Click here to learn about the RDCRN-sponsored survey.
RDCRN is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases. Conquer MG and the Myasthenia Gravis Foundation of America partner with RDCRN through its work with the Myasthenia Gravis Rare Disease Network (MGNet).
This page offers valuable resources for myasthenia gravis patients with regard to COVID-19.
- Myasthenia Gravis and the COVID-19 Epidemic: Things for you to know. (27-minute video) Henry Kaminski, MD, George Washington University, explains coronavirus basics, answers questions specific to those who have myasthenia, and identifies important ways to boost your health.
- Click to read Guidelines for Management of Myasthenia Gravis and Lambert-Eaton Myasthenic Syndrome during COVID-19 Pandemic, written by the International MG/COVID Working Group. This article was published online March 24, 2020 in the J Neurol Sci. https://doi.org/10.1016/j.jns.2020.116803 You’ll find advice to share with your doctor about continuing your current therapies, whether to shift to home infusions, and more.
- The Muscular Dystrophy Association (MDA) has published a guide for medical professionals, addressing how to provide pulmonary (breathing) support for neuromuscular patients. MG patients may want to be prepared to share this with physicians if they need emergency care. Pulmonary Support for Neuromuscular Disease Patients During COVID19 Pandemic
- Click here to see what you can do to boost your own immune health.
MARCH 12, 2020. Like you, those of us at Conquer MG have been closely following news of the coronavirus. We recognize many individuals who have MG may be at risk for serious illness in the event they contract the virus. We wanted to share our current understanding of the illness with you.
About the Coronavirus
The strain of the coronavirus causing this illness is called COVID-19. The virus is thought to spread through respiratory droplets produced when an infected person coughs or sneezes. It may be possible to acquire the illness if you’re nearby someone who is ill, or by touching a contaminated surface.
Coronavirus symptoms range from mild cold-like illness to severe breathing difficulty.
What Information is Reliable?
The links at the top of this page were created by expert doctors and researchers in the MG community. In addition, these sources – the Center for Disease Control (CDC) and the World Health Organization (WHO) – offer trustworthy information:
Below we share links from the CDC about people who are most at risk, and steps you can take to prevent becoming ill.
We hope to share more information that will be useful as the situation unfolds.
ADVICE FROM THE CDC
To protect yourself from exposure, the CDC recommends:
- Avoid close contact with people who are sick.
- Avoid touching your eyes, mouth, and nose with unwashed hands
- Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use hand sanitizer with at least 60% alcohol
- Stay home when you’re sick
- Cover your mouth and nose when you sneeze or cough; throw used tissues in the trash
- Clean and disinfect frequently touched objects and surfaces (for instance, your phone, TV remotes)
For more information, click these:
Who is at Risk for Serious Illness from COVID-19
The CDC notes those most at risk for serious illness from COVID-19 include older individuals and those who have serious chronic medical conditions. This includes people who are immunocompromised, such as people receiving immunosuppressant treatments for myasthenia gravis.
If you are at higher risk of getting very sick from COVID-19, you should:
- Stock up on supplies.
- Take everyday precautions to keep space between yourself and others.
- When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.
- Avoid crowds as much as possible.
- Avoid cruise travel and non-essential air travel.
- During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.