Information and Recommendations
From the Scleroderma Foundation
Medical & Scientific Advisory Board Leadership Committee*
[Reviewed July 1, 2020]
- 10/21 WEBINAR Coping with Both a Pandemic & Scleroderma, Lee Shapiro, M.D.
- 5/1 UPDATED Statement COVID-19 (Coronavirus) Information & Recommendations
- 4/24 Webinar Recording: "Balancing Your Immune System: A Special Webinar on Nutrition for Scleroderma Patients,"Elizabeth R. Volkmann, M.D., M.S., University of California, Los Angeles
- 4/16 Webinar Recording: "Taking Care of Yourself at Home: Maintaining Hnd and Face Mobility," Janet Poole, Ph.D., University of New Mexico"
- 3/27 Webinar Recording: "Staying Well During COVID-19," Tracy Frech, M.D., M.S., University of Utah
- 3/21 Video Forum Recording "Scleroderma & COVID-19: A Conversation with the Experts"
- 3/21 Statement "Important Information Related to COVID-19 and Juvenile Scleroderma
- 3/20 Message from Scleroderma Foundation CEO, Robert J. Riggs
- 1/4/20 Información Importante Traducida al Español Sobre COVID-19 y Esclerodermia Juvenil
- 30/3/20 Español "COVID-2019 ("Coronavirus") Información y Recomendaciones del Comité de Asesoría Médica y Científica de la Fundación de la Esclerodermia
Note: The following information and recommendations may change as more is learned about COVID-19. Please check back for regular updates. We encourage checking the US Centers for Disease Control and Prevention for up-to-date information and recommendations.
Updated information and tips are available at www.coronavirus.gov.
Individuals diagnosed with Systemic Sclerosis, especially those who are on immunosuppressive treatments, or have lung disease, strictly adhere to national, state, and local directives for social distancing, and stay at home orders.
During the rapidly evolving COVID-19 pandemic, restrictions on social distancing, self-isolation, and "shelter at home" mandates vary greatly by state and locality.
It is important that those with underlying health conditions, including Systemic Sclerosis, those taking immunosuppressive treatments or who have lung disease practice the maximum precautions to reduce the risk of COVID-19 exposure. These include:
- Staying at home as much as possible and in accordance with local mandates
- Maintaining social distancing (6 feet apart from other individuals you are not living with)
- Employing vigilant hygiene practices
Additional information can be found at www.coronavirus.gov.
Frequently Asked Questions:
What is COVID-2019 (also called “Coronavirus” and COVID-19)?
Coronavirus Disease 2019 (COVID-2019) is a viral influenza-like illness caused by a new strain of coronavirus named “SARS-CoV-2.” It is primarily a respiratory (lung) infection. The infection often leads to a mild flu-like illness; however, in older persons and persons with underlying medical conditions, including lung and autoimmune diseases, COVID-19 can lead to serious and even fatal complications.
The key symptoms of COVID-19 are fever and cough, and shortness of breath, although any other flu-like symptoms may be present, including fatigue, nausea, vomiting, diarrhea and musculoskeletal symptoms (joint and muscle aches). Loss of smell or taste can also occur.
How Does Infection Spread?
Coronavirus spreads primarily by contact with droplets from an infected person. When an infected person coughs or sneezes, tiny droplets of liquid are thrown out. These droplets quickly settle onto nearby surfaces and the floor. If you are standing within about 6 feet, the droplets could land on you directly or you might inhale them. Usually, however, the virus enters your body when you touch a droplet and then your hands bring it to your face, where it enters through the mucosa in your mouth, nose, or eyes. Less commonly, the virus can also be transmitted from solid surfaces such as steel and wood. It may also be transmitted through the gastrointestinal tract.
How Can I Protect Myself and My Family?
Coronavirus spreads primarily by contact with droplets from an infected person. However, people can be asymptomatic and still be shedding the cirus. Therefore, the best ways to protect yourself and your family are:
- Avoiding crowds and practicing “social distancing” is very important to reduce the risk of getting infected and to slow the spread of the virus in the community. If you have scleroderma, particularly with involvement of the lungs, you should avoid being in crowds (examples: movie theatres, shopping malls, travel by airline or public transit, etc.). You should maintain a distance of 6 feet or more from other persons whenever possible.
- Wash your hands frequently with soap and water, especially before eating.
- If soap and water are not available, the next best thing is a hand sanitizer containing at least 60% isopropyl alcohol.
- Avoid touching your face. The number one way people spread coronavirus is by touching a surface that has been contaminated by droplets someone else coughed or sneezed out, and then transferring the virus to their own nose, mouth or eyes by touching their face.
- Clean heavily used surfaces frequently. Heavily used surfaces include doorknobs, light switches, countertops. Clean these with disinfecting wipes designed to kill “flu” viruses, or with a cleaning product based on at least 60% isopropyl alcohol, hydrogen peroxide or bleach.
- Wearing a regular surgical mask is recommended for immuno-compromised and immuno-suppressed individuals when outside the home to safeguard against infection. Additionally, if you develop symptoms that suggest infection, you should wear a regular surgical mask. Wearing a regular surgical mask will help to catch the droplets you produce by coughing or sneezing and, thus, reduce the odds of infecting family members or others.
- High-Quality “N95” masks are NOT recommended for use by the general public against coronavirus. Wearing an N95 mask, if you are not familiar with how to use them or if it is the wrong size for you, can actually INCREASE YOUR RISK of contracting coronavirus, because you will be constantly adjusting it, and you adjust it by touching your face.
How Dangerous Is COVID-19?
The new coronavirus appears to be slightly more contagious than regular flu. While more than 80% of infected persons will have mild symptoms that they can manage at home without requiring any medical care, 5% will have a dangerous form of the disease. In particular, persons with chronic diseases including lung disease and scleroderma are at higher risk for the severe form of the disease. A particular concern with COVID-19 is that it tends to affect the lungs, which may already be injured in some persons with scleroderma.
As a Person Diagnosed with Scleroderma, Should I Be Worried?
Having scleroderma, especially if your lungs have been involved, may increase your risk for developing a more severe form of the COVID-19 illness. Taking certain immunosuppressive medications (medicines like CellCept, Rituxan, and others) may also increase the severity of COVID-19 if you do end up catching it. Methotrexate is believed to increase risk only slightly, and hydroxychloroquine (Plaquenil) is not believed to increase the risk at all.
- There is currently no evidence to indicate that you should stop your scleroderma medication unless you develop a fever or other symptoms that make you think you may be infected.
- You should speak with your rheumatologist before discontinuing your medication.
What Should I Do if I Think I May be Infected?
The key symptoms of COVID-19 are fever accompanied by a cough, as well as shortness of breath. Loss of smell or taste may also be early signs of COVID-19. If you have these symptoms, or if your baseline cough, shortness of breath or diarrhea are getting worse, you should contact your primary care doctor or an Immediate or Urgent Care facility by telephone or messaging in order to arrange for an evaluation. You should not go to a clinical setting for an evaluation without communicating with the office first.
If you are having symptoms, you should not come in for a routinely scheduled appointment with your rheumatologist and you should not come in for any IV medication infusion appointments, as there may be other patients in the office who might be at risk of being infected. Please discuss with your rheumatologist whether you need to come in right now for your routine evaluations or whether they can be done by phone/video or in the future.
*The Leadership Committee of the Scleroderma Foundation’s Medical & Scientific Advisory Board is:
Virginia Steen, M.D., MSAB Chair
Georgetown University School of Medicine
Maureen D. Mayes, M.D., M.P.H.
McGovern Medical School
University of Texas
Richard Silver, M.D.
Medical University of South Carolina
Lorinda Chung, M.D.
Stanford University School of Medicine
John Varga, M.D., MSAB Immediate Past Chair
Feinberg School of Medicine
Jane E. Dematte D'Amico, M.D., Consulting Pulmonologist
Feinberg School of Medicine