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As information on the novel coronavirus disease, COVID-19, dominates our daily lives, individuals with sarcoidosis and their loved ones are bound to have questions about the potential health risks of COVID-19 as they pertain to sarcoidosis patients and others who may have compromised immune systems. FSR is diligently following the progress of this pandemic and actively seeking out the best information for our community. FSR encourages following the recommendations of your healthcare team regarding your personal health and well-being. We also encourage our community to stay diligent about following updates from the CDC and state/local health departments, as they will have the most up to date information for your geographical region.
What is COVID-19?
COVID-19 is the novel coronavirus disease that is currently causing a global health crisis. It is a respiratory infection that was newly discovered in humans and appears to be easily transmissible. Individuals with pulmonary or cardiac sarcoidosis – and those on immunosuppressant medications due to sarcoidosis – may have an increased risk of developing more severe complications of COVID-19 if they contract the illness.
Currently, the CDC recommends the following to prevent the spread of COVID-19:
- 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.
- CDC does not recommend that people who are well wear a face mask for protection. Face masks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease. The use of face masks is crucial for health workers and people who are taking care of someone in close settings.
- 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 60-95% alcohol.
Latest updates from trusted resources:
Research on COVID-19 for our Community
Help researchers who are trying to better understand the potential impact of this disease on the rare disease and sarcoidosis communities by participating in the following survey opportunities:
Dr. Marc Judson of Albany Medical Center discusses the results of the COVID-19 and sarcoidosis survey
FSR Overview: Immunosuppressive Treatments & COVID-19 Vaccines
This webinar addresses concerns about how immunosuppressive treatments affect the efficacy of COVID-19 vaccines, particularly in people with sarcoidosis. Co-Director of Stanford’s Sarcoidosis Program, Dr. Matthew C. Baker tackles these concerns and discusses the types of precautions folks should continue to take based on those factors. View more in this report.
COVID-19 Vaccines and Sarcoidosis
Watch as Dr. Peter Sporn of Northwestern Medicine and Dr. Wonder Drake of Vanderbilt answered community questions about the COVID-19 Vaccines and Sarcoidosis. Moderated by patient and SarcFighter Podcast creator and host, John Carlin.
FSR Resources – Sarcoidosis and COVID-19
Watch the below recording of a webinar with Dr. Divya Patel on December 10, 2020 that answers questions about how COVID-19 is impacting the sarcoidosis community, how to protect yourself and your loved ones, and preliminary info on the COVID-19 vaccinations** (please see note below.)
**Please note** Since this session was recorded on December 10, 2020, an article was published in the New England Journal Of Medicine detailing the Pfizer-BioNTech SE vaccine safety and efficacy clinical trial (https://www.nejm.org/doi/full/10.1056…). This publication details the types of patients which were included and excluded from the trial (in the supplementary documents section and also on https://clinicaltrials.gov/ct2/show/N…). Unfortunately, the study specifically excluded people who are immunocompromised, those with autoimmune conditions, and patients on immunosuppressive therapy. This means that the safety and efficacy of the vaccine has not been tested in this population. However, the fact that these patients were excluded does not mean that patients who are immunocompromised or taking immunosuppressive medications cannot or should not take the vaccine. In fact, it seems that the Centers for Disease Control (CDC) will likely prioritize vaccination in this population. However, if you are on immunosuppressive medication, it is possible that the vaccine may not be as effective (just like with other vaccines). I urge you to look for forthcoming guidance from the CDC (https://www.cdc.gov/coronavirus/2019-…) and to also talk to your doctor. In the meantime, please continue to protect your selves by wearing masks and socially distancing yourself.
-Divya C. Patel, DO
Watch the video below for FAQs about sarcoidosis and COVID-19, answered by Dr. Peter Sporn of Northwestern (March 20, 2020)
FSR hosted an online Q&A forum with sarcoidosis expert Dr. Divya Patel, who answered patient-submitted questions about sarcoidosis and COVID-19. See Dr. Patel’s responses here.
Resources from FSR Partners:
- NORD COVID-19 Resource Center (National Organization for Rare Disorders – NORD)
- Coronavirus: Mental Health Coping Strategies (National Alliance on Mental Illness)
- WEBINAR: Coronavirus Preparedness for People with Chronic Diseases (National Health Council)
- Coronavirus Prevention and Risk for the Rare Community (NORD)
- Pulmonary Hypertension and COVID-19 Resources (Pulmonary Hypertension Association)
Watch the recorded webinar below from NORD entitled A Rare Response: Addressing the COVID-19 Pandemic (April 2, 2020)
The American Thoracic Society has the following resources:
- Coronavirus – Public Health Resource for Clinicians
- Coronavirus – Patient Information Resource for General Public
- ATS Twitter Chat on COVID-19