TAMPA, Fla. — You can find a lot on social media. Cute pictures of puppies and kittens, news and updates about your cousin's daughter's new baby.
And, sometimes you'll find support groups with thousands of other people feeling the same symptoms for an illness you never even knew existed.
In the United States, more than seven million people have been diagnosed with COVID-19. Hundreds of thousands of those who have survived coronavirus are reporting symptoms lasting weeks or months after they've tested negative for the virus.
Those people are being called COVID-19 "long haulers."
"They're really, really mobilized and collecting data and meeting with government agencies and it's amazing to see patient advocacy driving this," said Lauren Stiles, the president of Dysautonomia International.
Stiles herself had COVID-19 earlier this year. She's also been diagnosed with POTS, or Postural Orthostatic Tachycardia Syndrome, an autonomic disorder.
An autonomic disorder is when your nervous system isn't functioning properly, affecting things like your heart rate or blood pressure and involuntary bodily functions like sweating.
Stiles found that in these COVID-19 long hauler support groups, people were describing symptoms that mirrored autonomic disorders.
Autonomic disorders sometimes can take years to diagnose. It took Stiles two years to get a correct diagnosis and treatment for her symptoms. That's why she's so encouraged to see people sharing their symptoms, so they can hopefully get treatment for them more quickly than she did.
"Everyone's a little different, but some people are having excessive tachycardia, which is a fast heart rate. Some people are having hypertension or high blood pressure or other people are feeling lightheaded and dizzy when they stand up, which is a very common symptom when your autonomic nervous system isn't working right," Stiles said.
She's been working with neurologists to study the link between COVID-19 and dysautonomia. There are now teams at Stanford, Harvard and the Mayo Clinic following up with COVID-19 long haulers to figure out how or why people with long-lasting symptoms are being diagnosed with nervous system disorders.
"It could be an autoimmune like process, where your body starts generating antibodies that attack your own healthy tissues because it's trying to fight the virus but it kind of got confused and it starts fighting you. It could be some nerve damage that happened during the virus that's ongoing. It could be definitely something going on with blood clotting and COVID. If you get a lot of very tiny blood clots in your small blood vessels, you could cut off the oxygen supply to your nerves, and this could cause some nerve injury," Stiles said.
Since so many people are finding that their COVID-19 symptoms are mirroring autonomic disorders, Dysautonomia International is opening its October convention up to everyone to attend virtually, free of charge, so they can understand where and how to find treatment for their symptoms and what it could mean for the long-term.
The website also lists doctors who are familiar with treating symptoms of autonomic disorders. Florida appears to have one of the largest collections of doctors in the country who are knowledgeable about the condition.
If you've tested positive for coronavirus or suspect you've had COVID-19 and are at least 18 years old, you can take part in the study Stiles is working on with Stanford by clicking this link. Participants with questions about their rights concerning the study can call 1-866-680-2906.
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