Support Hotline: (866) 737-5999 info@multiplesystematrophy.org
COVID Information for the Multiple System Atrophy Community

COVID Information for the Multiple System Atrophy Community

Updated 8/13/2021: In consideration of the FDA announcement regarding the third vaccine shot, MSA patients are generally not considered to be immunosuppressed. Every case is different however, and the decision to receive a booster shot should be discussed with the clinical team caring for the patient.

While MSA patients as a whole are not considered to be more likely to contract COVID, the consequences of becoming ill with the virus may be more extreme. Vaccination and booster shots should be discussed with the clinical team caring for the patient in order to arrive at the best decision for each patient. Patients who have respiratory compromise would be expected to be more vulnerable because COVID-19 is primarily a disease of the lungs and respiratory tract. Many patients with MSA do develop impaired respiratory (breathing) control and, in more advanced stages, develop pneumonias. As such, we would urge patients with MSA to take especially vigorous precautions against exposure to COVID-19, including frequent hand washing/sanitizing, restricted exposure to others and not delay in seeking medical advice if symptoms of fever, cough or shortness of breath develop.

About The Coronavirus:

COVID-19 (coronavirus disease 2019) is a respiratory tract infection caused by SARS-CoV-2 virus. Coronaviruses are responsible for about 15-20% of common colds, but there are times when new viruses enter the human population for the first time. When this happens, sometimes there is little to no protection from our previous exposures to coronavirus because the virus is so different. This seems to be the case with COVID-19.

The Infection

COVID-19 has been seen mostly in Asia, primarily China, South Korea, and Japan, but has recently spread to Europe (Italy), the middle East (Iran), and the United States with 44 states now reporting cases. While many have experienced only mild symptoms (runny nose, cough, and cold-like symptoms), some people, particularly the elderly and those with underlying medical problems, have experienced severe disease in the lower parts of their lungs (pneumonia). Young adults have been infrequently affected, and children <12 years old have largely been protected from developing COVID-19 disease.

General Concerns

There are two primary concerns that physicians and scientists have raised. First, the mortality rate of COVID-19 may be substantially higher than for other respiratory viruses. Right now, the mortality rate is estimated to be between 1-3%; in contrast, the mortality rate for influenza is about 10-30 times less (about 0.1%). Undoubtedly, the mortality rate will be less than currently estimated since we don’t know the true number of mild infections; nevertheless, there remains a real concern that COVID-19 is more severe than what we are used to seeing with other seasonal viruses. Second, the virus spreads efficiently, being transmitted before symptoms occur and staying in the nose and saliva for days to weeks after symptoms improve.

COVID-19 Misconceptions

There have been numerous misconceptions that have arisen.

The biggest misconception is that masks are not useful for slowing the spread of COVID-19..

Masks are essential for slowing the spread between people:

  • If a person is sick (even asymptomatic) wearing a mask will help keep them from spreading the virus by trapping their air particles in their mask.
  • Masks are now believed to help protect individuals wearing them from getting COVID-19.

Conclusion: You should wear a mask and you should avoid people who are not wearing a mask.

Recommendations for the MSA Community

This is an important time to be prepared but not panicked. Practical steps should be taken by MSA patients and those in close contact with them to lower the risk of exposure to COVID-19:

  • Use careful hand hygiene by washing hands frequently with soap and water or hand sanitizer that contains at least 60% alcohol. In other words, wash your hands like you just touched hot peppers and need to take your contact lenses out.
  • Wear a mask and stay physically distanced (at least 6 feet apart) if you have visitors or must go out.
  • Require any visitor (home nurses, etc.) to wear a mask when in your home.
  • Stay home as much as possible and avoid crowds of people where the risk of spreading and thus getting COVID-19 is high.

These important strategies can help lower your chances of contracting COVID-19.

For the most up to date information on COVID-19 please reference the CDC website.

Watch the MSA Coalition’s Webinar

 

MSA Care Amidst The Pandemic:

COVID-19

Recorded on April 20, 2020

Resources on MSA and COVID-19

The Dysautonomia Center at NYU issued this guidance for MSA patients, including answers to frequently asked questions. This article is an especially useful compendium and we highly recommend it. If you are wondering whether to keep your appointments, or how to handle home health care visits, this is a great resource.

General COVID-19 Information
In the United States, we rely on the Centers for Disease Control and Prevention for information and advice; the website is here.

Information for those enrolled in the Verdiperstat Phase 3 Clinical Trial
Biohaven Pharmaceuticals have provided some answers to patient questions regarding the ongoing administration of this important clinical trial during this time of uncertainty. Read our blog with Q&A here.

Self-care in a distressing time
Living in the time of COVID-19, and especially when also dealing with a difficult disease, requires great psychological energy. Many mental health professionals have good advice for all of us as we practice social distancing, sheltering in place, or, in some cases, are quarantined. Here are a few good practices:

  • Stick to a routine
  • Get outdoors, if you are able, at least once a day for thirty minutes, maintaining social distancing guidelines
  • Stay hydrated and eat good food
  • Get your COVID-19 information from reliable medical sources
  • Try to focus on the good in the world, the people who are helping
  • Remind yourself that this is temporary
  • As much as possible, be kind to yourself and patient with those near and dear to you

If you need help, reach out to appropriate resources and providers in your community. And again, we at the MSA Coalition are a phone call away at 866-737-5999. We will return your call and try to direct you to assistance.
If you would rather use email, our address is info@multiplesystematrophy.org. You can see updated information at our website, www.msacoalition.org.

Communicating with Others
The Coalition maintains several Facebook groups to provide those in the community with information and a place to ask questions. These groups and pages are monitored, and include the following:

The MSA Coalition Facebook Page

Public Groups:

MSA Coalition Public Discussion group (7500 members)
MSA Research News group (2900 members)

Private Groups:

MSA Buddies group (4300 members)
MSA A Patients Journey group (400 members)
MSA Widows and Widowers group (200 members)
Children of MSA Warriors (270 members)
MSA Coalition Volunteers (700 members)

US Regional Groups (Private):

MSA New England regional group
MSA Middle Atlantic regional group
MSA South Atlantic regional group
MSA Northeast central regional group
MSA Northwest central regional group
MSA Southeast central regional group
MSA Southwest central regional group
MSA Mountain regional group
MSA Pacific regional group

We are here to help!
This is uncharted territory for all of us. It will take all of us acting together for the common good to flatten the curve and get through it. History shows us other generations have faced crises and emerged stronger, and we all know that the MSA community shows its resilience time and time again. Together, we are strong.

Stay safe. Take care of each other. Wash your hands.