FREMONT, Mich. — Early data from Stony Brook University and Stanford University found 57% of long COVID patients are developing moderate to severe dysautonomia, including POTS, according to Lauren Stiles, president of Dysautonomia International.
Dysautonomia International, a 501(c)(3) non-profit organization, deals with various forms of Dysautonomia, an umbrella term used to describe several different medical conditions which cause a malfunction of the Autonomic Nervous System. Of the more common known variations of Dysautonomia are: POTS - Postural Orthostatic Tachycardia Syndrome, NCS - Neurocardiogenic Syncope, and MSA - Multiple System Atrophy.
While Dysautonomia isn't rare - 70 million people worldwide are living with it - it's not always easy to diagnose. Rachel Miller, primary nurse care manager, said it's typically not a quick turnaround time.
"The average diagnosis time is four years," Miller said. "But for me, because my mom was on it - she was such a great advocate - I got my diagnosis in three months."
She noted there's a real possibility some people recovering from COVID could develop POTS. The syndrome can affect the body in various ways, some of the more notable symptoms: rapid heart rate, brain fog, fatigue, and sometimes fainting.
Miller said you need to keep an eye on your health. Talk with your doctor if your symptoms don't go away after dealing with COVID.
"You know your body. You know what's normal and what's not normal for your body and you have to be able to trust that," Miller said.
She was diagnosed with POTS 15 years ago. Though her brother was diagnosed a year later, he grew out of it, which is a possibility.
However, Miller has lived with the syndrome for years. Unfortunately, last year her family joined a new club no one wants to be a member of, catching COVID.
"I got it first, and then my mom got it, and then my dad got it," Miller said. "Unfortunately my mom wasn't able to survive it."
Unfortunately, six weeks after she lost her mother, she lost both of her grandparents to the disease.
Since Rachel knew of her POTS diagnoses, she noted how much more intense she was impacted by surviving COVID.
"We are tweaking my medications and I'm back in physical therapy and trying to recondition my body from fighting off COVID," Miller said.
But, she noted, for those who have lasting COVID symptoms far after battling the virus, it's a medical issue that should be checked out by a doctor.
To help with this growing issue, Dysautonomia International has given funding of $100,000 study to the University of Toledo to explore immune and platelet abnormalities in POTS and Long COVID patients. This study will be led by Dr. Blair Grubb, internationally recognized POTS expert, click here for more details.