Dysautonomia International is closely monitoring CDC and WHO reports and speaking with our Medical Advisory Board regarding the ongoing coronavirus (COVID-19) pandemic. In the coming weeks, we'll continue to post updated information and resources here that may be helpful for dysautonomia families. If you'd like to share this page with others, use this quick link: dysautonomiainternational.org/coronavirus.
General COVID-19 Educational Resources
NIH Director: To Beat COVID-19, Social Distancing Is A Must
CDC: Coronavirus Symptom Checker
CDC: What to Do If You or Someone In Your Home is Sick
CDC: Resources for Home
World Health Organization: Coronavirus Page
Harvard Health Coronavirus Resource Center
Johns Hopkins Coronavirus Mapping
Who is at higher risk of serious complications from COVID-19?
Older individuals and individuals with heart disease, lung disease or diabetes are at an increased risk of serious complications from COVID-19. The CDC has also identified other medical conditions that may increase the risk of complications for individuals of any age.
Read the CDC's guidance for older adults, individuals with asthma, HIV, and pregnant or breastfeeding women.
COVID-19 Resources for the Dysautonomia Community
Dysautonomia International event postponements
Accessing Dysautonomia Medical Care During the Coronavirus Pandemic
Can you donate blood or plasma if you have POTS or NCS?
Coronavirus and POTS: Q&A with Dr. Raj
How to Beat Boredom While Social Distancing
Keeping Calm: Supporting Your Emotional Health During the Pandemic
Are people with postural orthostatic tachycardia syndrome (POTS) at an increased risk of severe complications from COVID-19?
There is no evidence that POTS puts individuals at increased risk of serious complications from COVID-19.
Some people with POTS have other medical conditions, like asthma or immune deficiency diseases, which may increase their risk of serious complications.
While POTS does involve a fast heart beat, it is not considered to be the type of cardiovascular disease that would increase the risk of COVID-19 complications. Likewise, while POTS does involve the nervous system, it is not considered to be the type of neurological disorder that would increase the risk of COVID-19 complications.
Some POTS patients develop hypertension when standing up (known as orthostatic hypertension), but this is not due to the same mechanism as regular hypertension. There is no evidence that people with orthostatic hypertension are at increased risk of COVID-19 complications.
There have been journal articles describing antibodies and other immune system abnormalities in a subset of POTS patients, and about 20% of people with POTS have known autoimmune diseases like Sjogren's or Hashimoto's thyroiditis, but this is not the same thing as having a suppressed immune system.
There has been little research published specifically on immune function in POTS to date. There was one study documenting an increase in immune deficiency diseases in POTS (found in 2 of 100 POTS patients). There is some overlap between POTS and chronic fatigue syndrome. ME/CFS immunologist, Dr. Nancy Klimas, recently posted a video noting that people with ME/CFS are modestly immunocompromised.
People with POTS often report an increase in POTS symptoms during and for several weeks after any infection. For this reason, it is reasonable for people with POTS to take extra precautions to protect themselves from COVID-19.
Are people with neurocardiogenic syncope (NCS), also known as vasovagal syncope (VVS), at an increased risk of severe complications from COVID-19?
There is no evidence that people with NCS/VVS are at an increased risk of severe complications from COVID-19. While NCS/VVS involves changes in the heart rate, is it not considered to be a cardiovascular disease that would increase the risk of COVID-19 complications.
Are people with inappropriate sinus tachycardia (IST) at an increased risk of severe complications from COVID-19?
There is no evidence that people with IST are at an increased risk of severe complications from COVID-19. While IST involves changes in the heart rate, is it not considered to be a cardiovascular disease that would increase the risk of COVID-19 complications.
Are people with autoimmune autonomic ganglionopathy (AAG) at an increased risk of severe complications from COVID-19?
AAG is a rare autoimmune disease that impairs the function of the autonomic ganglia. There is no evidence that AAG patients have weakened immune systems. However, people with AAG tend to be older adults, and some may be using immune suppressing medications like Rituxan or steroids. This may increase the risk of COVID-19 complications for these patients. Do not stop your immune suppressing medications unless advised to do so by your healthcare professional. People with AAG often report feeling more symptomatic during and for a few weeks after an infection, so it is reasonable for people with AAG to take extra precautions to protect themselves from COVID-19.
Are people with pure autonomic failure (PAF) at an increased risk of severe complications from COVID-19?
PAF is a slowly progressive neurodegenerative disease seen in older adults. Due to the age of PAF patients, individuals with PAF may be at at increased risk of serious complications from COVID-19. PAF patients with pulmonary or cardiovascular complications may also be at an increased risk for serious complications.
Are people with multiple system atrophy (MSA) at an increased risk of severe complications from COVID-19?
MSA is a progressive neurodegenerative disease seen in older adults. Due to the age of MSA patients and difficulty these patients have recovering from infections, individuals with MSA are at at increased risk of serious complications from COVID-19. Learn more here.
Are people with diabetic autonomic neuropathy (DAN) at an increased risk of severe complications from COVID-19?
Approximately 25% of people with diabetes develop autonomic neuropathy, making it one of the most common causes of dysautonomia. People with diabetes are not at an increased risk of acquiring COVID-19, but when they do acquire it, they are more at risk of serious complications. Please review the guidance from the American Diabetes Association for additional information.
Are people with other forms of dysautonomia at an increased risk of severe complications from COVID-19?
It is important to remember that "dysautonomia" is not a distinct diagnosis. It is an umbrella term that includes many different disorders of the autonomic nervous system, ranging from mild to severe. There are many different forms of dysautonomia and many different underlying medical conditions that can cause autonomic nervous system dysfunction. We encourage you to contact your healthcare provider if you have COVID-19 questions about a different form of dysautonomia that is not discussed above.
COVID-19 Position Statements from Other Health Charities
The Mastocyosis Society
The Ehlers-Danlos Society
The Sjogren's Syndrome Foundation
American Heart Association (stroke and heart disease)
American Cancer Society
American Lung Foundation
Immune Deficiency Foundation
United Mitochondrial Disease Foundation
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