COVID-19 Resources

Facebook Live - MDA Frontline COVID-19 Q&A with MDA’s Chief Medical Advisor Dr. Barry Bryne and MDA’s Kristin Stephenson

Watch Now on Facebook Watch Now on YouTube

MDA Summer Camp Update, 3/26/2020
After careful review of the growing seriousness and community spread of the coronavirus (COVID-19), and discussion with trusted medical professionals and organizations, MDA has made the difficult decision to cancel all summer camp programs in 2020. Our top priority is the health and safety of our campers, volunteers and staff. We know that our campers, volunteers, sponsors, and MDA staff look forward to these life-changing weeks at camp every year, and this decision was not made lightly. More information about virtual opportunities to connect with the MDA community will be available soon.

MDA Conference Update, 3/9/2020
After consulting with our physician experts, community leaders, participating panelists, attendees, meeting sponsors, and vendors, we have decided to postpone our 2020 MDA Clinical & Scientific Conference scheduled for March 22–25, 2020, at the Walt Disney World Dolphin Resort in Orlando, Florida, due to concerns over the Coronavirus. Please stay tuned for further updates.

 

COVID-19 Recommendations for the Neuromuscular Community

Current guidelines for COVID-19 exposure have focused on specific communities related to risk to travelers, the elderly and those with conditions that affect respiratory health. In order to inform the neuromuscular community of specific information which is relevant to COVID-19, MDA has prepared the following information which expands on the CDC recommendations for the general population in order to keep the neuromuscular community up to date on best practices for managing the global spread of SARS-CoV-2.

A few general points will help patients and families to have a better understanding of the current situation:

  • About COVID-19

    The new virus is called SARS-CoV-2, which is part of the family of betacoronaviruses that are common in people and various animals, including camels, cattle, cats, and bats. The original spread from live animal markets in China has now continued with person to person transmission leading to global spread which is evolving rapidly. The disease caused by SARS-CoV-2 is now known as COVID-19.

    The virus is spread from 1) person-to-person exposure (principal means of transmission) and 2) surfaces exposed to the virus. Exposure is by respiratory droplets produced when an infected person coughs or sneezes leading to transmission to others in close proximity. A challenge is that some transmission can occur before an infected individual becomes ill making it hard to isolate that individual. The highest risk of spreading is from those that have symptoms of fever and respiratory illness. Late in the illness there is the potential for gastrointestinal infection and exposure from stool. Spreading from infected surfaces can be managed by careful handwashing (see below).

  • Symptoms

    Symptoms may appear 2-14 days after exposure. Findings compatible with SARS-CoV-2 infection include fever, cough, and/or difficulty breathing.

  • What to do if you are sick?

    For neuromuscular disease patients, it is important that you seek prompt medical attention if you or anyone in your household is identified with symptoms consistent with COVID-19 or for documented exposure to an individual who has tested positive. Before seeking care, you should contact your healthcare provider and tell them that you have symptoms consistent with COVID-19 or have been exposed to someone who has or is being evaluated for COVID-19. It is important to notify your healthcare provider of your symptoms and potential exposure prior to entering a healthcare provider’s office to ensure proper precautions can be taken to help keep other people in the office or waiting room from getting infected or exposed.

    Contact your healthcare provider or health department to see if you should be tested. Your healthcare provider will provide guidance for having your symptoms evaluated and monitored.

    If you have a medical emergency and need to call 911, notify the dispatch personnel that you or a member of your household has, or is being evaluated for SARS-CoV-2. You should go to an Emergency Room or Urgent Care facility if you are having shortness of breath or experiencing worsening symptoms. It is important that you call ahead to the facility and notify them if you or a member of your household has or is being evaluated for SARS-CoV-2.

    The CDC has developed guidelines to prevent the spread of COVID-19 if you are sick.

  • Prevention and Management

    There is currently no preventative vaccine or specific treatment for COVID-19. The best way to prevent illness is to avoid being exposed to the virus. However, as a reminder, CDC always recommends everyday preventive actions to help prevent the spread of respiratory diseases, including:

    • Avoid close contact with people who are sick.
    • Avoid touching your eyes, nose, and mouth.
    • Stay home when you are sick.
    • Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
    • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
    • Follow CDC’s recommendations for using a facemask.
      • CDC does not recommend that people who are well wear a facemask to protect themselves from respiratory diseases, including COVID-19.
      • Facemasks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease to  others. The use of facemasks is also crucial for health workers and people who are taking care of someone in close settings (at home or in a health care facility).
    • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.
      • If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. For information about handwashing, see CDC’s Handwashing website.

    For information specific to healthcare, see CDC’s Hand Hygiene in Healthcare Settings.

    These are everyday habits that can help prevent the spread of several viruses. CDC does have specific guidance for travelers.

  • Caregivers and Household Members

    It is important that caregivers and household members take all necessary precautions to avoid the risk of contracting COVID-19 and spreading the illness to someone with a neuromuscular disease. We recommend that neuromuscular patients and caregivers work together to identify a backup caregiver who will be able to provide care for the neuromuscular patient in the event that the caregiver gets sick. In addition to the preventative measures listed above, caregivers should also wash their hands or use hand sanitizer before and after providing care (such as feeding, bathing, and dressing) to help decrease the risk of exposure for the patient.

    The CDC website lists additional precautions for People at Risk for Serious Illness from COVID-19.

  • Guidelines for Healthcare Professionals

  • Federal Government Response to COVID-19

    Even during this pandemic, MDA won’t stop advocating for the neuromuscular disease community. Policies, regulations, and events on Capitol Hill are changing every day. Check out the latest on the federal government’s response to COVID-19 and how policies are affecting those with neuromuscular disease.

  • Additional Resources

COVID-19 and Myasthenia Gravis/Lambert-Eaton Myasthenic Syndrome
Various medications have been mentioned in the news and social media as being useful to treat COVID-19 (e.g., choloroquin, azithromycin, anti-virals etc). However, patients should be aware these are not proven to be effective. Moreover, some of these medications can potentially worsen myasthenia gravis (MG).

An international working group of MG experts has just released recommendations regarding treatment practices for MG and Lambert-Eaton Myasthenic Syndrome (LEMS) during this pandemic of Covid-19. Read the article here, or Download the PDF.

General Information

How to stay prepared from Ready.gov
Resources from the World Health Organization

Resources from the CDC