Medical researchers at the University of Calgary say a condition affecting autonomic bodily processes — those that occur automatically, such as heart rate, bladder function and sweating — is frequently found in people diagnosed with long COVID.
The condition is known as dysautonomia, an umbrella term for a group of related conditions. Support networks for those who suffer from it are working to raise awareness throughout October, which has been deemed Dysautonomia Awareness Month by the advocacy group, Dysautonomia International.
According to research by Dr. Satish Raj, a cardiologist and expert in autonomic health conditions at the University of Calgary, as many as 30 per cent of long COVID patients also meet the criteria for a condition called POTS, a form of dysautonomia known as “postural orthostatic tachycardia syndrome.”
According to Dysautonomia International, other studies have put the figure at between 70 per cent and 90 per cent.
The challenge is that the symptoms of the condition can be easy to dismiss. “Who likes to sit around and talk about their sweating,” notes Dr. Raj. “No one does that… These are just the background things that are useful for keeping you alive.”
Rashmin Hira, a PhD student at the Universty of Calgary and long COVID researcher, adds, “Unfortunately, a lot of people do get told that it’s just anxiety.”
That’s why raising awareness through events such as Dysautonomia Month are important, says Lauren Stiles, president and CEO of Dysautonomia International.
“(It) is one way that we help people get diagnosed faster,” Stiles says. “It’s also really important to raise awareness so that we can interest government and investors and other people to fund research in this group of diseases.”
When it comes to POTS, symptoms can include lightheadedness, nausea, blood pooling and a high heart rate. The most common treatments include increase intake of fluids and salt and, if possible, recumbent exercise.
But even if the symptoms and treatment of POTS appear subtle, it is nothing to take lightly, Stiles says. Thirty per cent of people with the condition rely on a wheelchair to get around and many others are unable to work.
“There are millions of people who really, really suffer from autonomic disorders,” Stiles says. “We want to build support and compassion for these patients in their communities so that they can get access to the resources that they need.”
Dysautonomia International is encouraging those who want to show support during the awareness month to share information with friends and family, participate in events, raise funds and wear a turquoise scarf.