Resources for Myositis patients about COVID-19
We are committed to providing you with trusted information and resources regarding the Coronavirus (COVID-19) pandemic. Below you will find such resources, as well as links to take action, videos, and upcoming events.
The best way to prevent catching or spreading coronavirus is often and thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately.
Watch Myositis, Immunosuppressants, and COVID Vaccine Response here.
Read the COVID-19 Vaccines and Myositis FAQ here.
“Venturing Out? Be Prepared and Stay Safe” guidelines by the CDC. See the CDC page here.
American College of Rheumatology (ACR)
The ACR provides official information about recommendations for medications and the COVID-19 vaccine.
Myositis, Immunosuppressants, and COVID Vaccine Response
Watch Myositis, Immunosuppressants, and COVID Vaccine Response, a webinar presenting new research about the vaccine response in those living with myositis, and taking immunosuppressant medications. This contains important information for patients and physicians and is a webinar we hosted in early June 2021 with an expert panel of physician-researchers from Johns Hopkins.
Wearing Fabric Face Coverings in Public
The CDC now recommends Americans wear fabric/cloth face coverings in public, in addition to the other Slow the Spread guidelines, such as social distancing, to help slow the spread of COVID-19. The link below is the CDC who provides information about fabric face coverings and how to make them. Share a photo of you in your mask for Myositis Awareness Month.
CDC Briefing with Chronic Disease Community
MSU co-sponsored, together with CreakyJoints, the Global Healthy Living Foundation, and many other organizations, a virtual briefing with the U.S. Centers for Disease Control and Prevention (CDC), John Hopkins Medicine, U.C. Davis Health, and organizations representing the chronic disease community on COVID-19. Watch the recording.
Stay informed by finding your local public health guidelines so you can help stop the spread. Find your state and local public health department online at https://www.naccho.org/membership/lhd-directory.
“A Chronic Illness Patient’s Guide to Coronavirus”
Visit this set of resources thanks to the Global Healthy Living Foundation (GHLF) and CreakyJoints. It includes information from experts, as well as prevention, mental health, and patient perspectives.
Managing Myositis Patient Care During the COVID-19 Public Health Crisis with Dr. Rohit Aggarwal
COVID-19 Resources
CDC, FDA, WHO
CDC
Coronavirus (COVID-19)
Hand Washing
If You Are at Higher Risk
How to Protect Yourself
Managing Stress & Anxiety
Emotional Health
Workplace, School, and Home Guidance from the CDC (PDF)
FDA
Emergency Preparedness
Food Safety and the Coronavirus Disease 2019 (COVID-19)
WHO
Coronavirus disease (COVID-19) Outbreak – WHO
From the World Health Organization (WHO)
From patient organizations
A Message from the ACR about Coronavirus Disease 2019 (COVID-19)
From American College of Rheumatology (ACR)
Coronavirus and Arthritis: What You Need to Know
From The Arthritis Foundation
Protecting Yourself During the Spread of COVID-19
From The American Lung Association
Mental Health and COVID-19
From Mental Health America
Myositis 101 for patients, COVID-19
Dr. Rohit Aggarwal, Co-Director of Myositis Center of the University of Pittsburgh, Chair of Medical Advisory Board of The Myositis Association (TMA) and author of the book “Managing Myositis: A Practical Guide” explains to patients in simple words about COVID-19, as well as what should we do.
Myositis 101 and COVID-19 videos for patients:
All you need to know about masks
Chloroquine & Hydroxychloroquine in COVID-19
COVID-19 & Immunosuppressive Drugs
COVID-19
Additional COVID-19 Resources
From the News
Print this so you don’t bring coronavirus home
“With the help of physicians and infectious disease experts, we built a tip sheet to make sure you don’t bring the virus back with you. Here are printable versions in English, Spanish and Chinese.” CNN
“One dangerous coronavirus ‘self-check test’ is circulating on social media. Here’s why you should avoid it.”
From CNN – In an interview with Dr. Robert Legare Atmar, an infectious disease specialist at Baylor College of Medicine, CNN shares a myth-busting article.
Myositis Support Community
Free, anonymous, 24/7 support, just for the myositis community
Myositis patients and caregivers can connect with others who understand what they are going through by joining our support community via the Inspire iOS app or by visiting our Myositis Support Community.
Hi Lizzy. That is a great question. We would suggest discussing that with your physician and an attorney (if needed). It is a topic we could address during our live webinar Tuesday at 2 PM ET if you are able to join.
Hi! Great resources. I have a question about Advance Care Directives. Mine currently states that I don’t want to go on a ventilator. Given CV treatment often ends in a ventilator, where can I get some thoughts and advice and guidance on updating my ACD – what are the chances of coming off the vent? This is my main worry at the moment…