KNOXVILLE, Tenn. (WATE) — They’re often called “invisible illnesses.” Forms of Dysautonomia can impact the entire body causing a wide array of symptoms and different levels of disability. Oftentimes, though, you cannot physically see the effects. Someone with Dysautonomia may look healthy, but inside the body is malfunctioning. Many COVID-19 long haulers are developing disorders like this, but millions were suffering from the misunderstood condition well before the pandemic forced a spotlight on their illnesses.
The Sharp Family, in Knoxville, has made it a mission to spread awareness. Chris Sharp worked with government officials in Farragut and Knox County to have a proclamation and resolution passed designating October as Dysautonomia Awareness Month. His wife, Kelly Sharp, is a cardiac nurse with a deeper understanding of the medical implications of Dysautonomia.
The Sharp’s three children all have POTS. It’s the most common form of Dysautonomia. It stands for Postural Orthostatic Tachycardia Syndrome. According to Dysautonomia International, there is no cure for POTS or FDA-approved drug to treat it. Some patients manage with physical therapy, off-label medication to treat symptoms, and a high salt and water diet. These options don’t work for all patients, though. Studies show approximately 25% of POTS patients are unable to work.
Doctors classify POTS as a disorder of the autonomic nervous system. That’s the system that controls everything you don’t think about like digestion, pupil dilation, temperature control, and heart rate. When this system is broken, the impacts are widespread and the symptoms are many.
Though the condition is characterized by an exaggerated heart rate upon standing, it is not a heart problem. Doctors say POTS is believed to be a neurological condition, but is poorly understood and causes can remain unknown. Estimates, according to Dysautonomia International, show roughly 50 percent of patients develop the disorder after an infection. This is why specialists in the field weren’t surprised to see so many COVID-19 patients develop POTS.
The Sharps have been promoting The POTS Walk, as well. It’s a virtual fundraiser that goes until the end of September. As of this publication, Tennessee was in sixth place for most fundraising in the country. WATE Anchor Summer Dashe is the Tennessee POTS Walk team captain. She developed POTS five years ago and aired a story about her own experience in hopes of helping raise awareness. Funds from the POTS Walk go directly to major research with the goal of better understanding the condition and helping these patients.
Prior to the pandemic, much of the medical field was unfamiliar with the condition. According to Dysautonomia International, patients waited an average of almost six years to receive a proper diagnosis. Very few specialists on the subject existed, so doctors were overwhelmed with patients. Now that more people are presenting with the syndrome, patients are reporting up to 18 month wait times to get into their autonomic specialists.
As awareness grows around the world forced by the jump in cases, East Tennesseans who have endured the crippling symptoms for years continue to fight for funding, research, and medical education. They fight for a better quality of life for themselves, those who came before, and those who will be diagnosed next.
You can donate to the Tennessee POTS Walk by clicking here.
A fundraiser will also be held on October 24 at Hard Knox Pizza in Hardin Valley from 4-7p.m. WATE Anchor Summer Dashe will be emceeing and speaking at this event.