The Daily Gamecock

Column: A lack of POTS research endangers patients

Doctor with a patient.
Doctor with a patient.

Postural Orthostatic Tachycardia Syndrome (POTS) is a very common form of dysautonomia — a disorder of the autonomic nervous system, affecting around one to three million people in the United States. However, experts believe there might be more people affected due to the lack of research on POTS. 

POTS affects so many individuals throughout the United States, but there's a huge lack of knowledge among medical professions about this condition. This is dangerous for current and prospective patients, and the medical world must learn more about how to treat this syndrome.

I started feeling symptoms of POTS after I had mono in the 9th grade. I had fainted a handful of times, I was always dizzy and my heart was always pounding. However, I pushed it aside and didn't think anything of it. During my junior year in French class, my hands started to shake uncontrollably, and I began to feel very lightheaded. 

One of my classmates had been dealing with POTS for about a year and suggested that I have POTS too because she recognized my symptoms. After three months of visiting various doctors, I was diagnosed with POTS. 

I was one of the lucky ones who was diagnosed quickly, but only because I had prior knowledge of this syndrome. Others aren't so fortunate.

Clemson alumna Sara Landstrom began feeling symptoms of POTS in 2014 when she was starting her junior year of high school. Her symptoms started small but gradually increased. That's when her mom decided to take her to a doctor.

Her mom, Cheryl Landstrom, said they went to "at least five different doctors" between August 2014 and February 2015 trying to find an accurate diagnosis for Sara. 

When Sara was finally diagnosed with POTS, the nearest doctor specializing in POTS was in New York.

"When Sara was diagnosed, there were only a handful [of doctors who treated POTS] in the United States," Cheryl said. "The little bit of research that was out there was that they weren't exactly sure what to do to treat it."

Dr. Catherine Sechrist, a pediatric cardiologist at Prisma Health Richland Hospital, said one of the main reasons doctors don't know much about it or don't feel comfortable taking care of this condition is because POTS "doesn't fit into any specific category of medicine."

"The autonomic nervous system impacts every area of the body, so it doesn't fit particularly within cardiology or neurology or GI. It affects everything," Sechrist said. "When you try to take a targeted approach, you miss the big picture."

POTS symptoms include severe and long-lasting fatigue, lightheadedness, brain fog, forceful heartbeats or heart palpitations, nausea and vomiting, headaches, excessive sweating, shakiness, intolerance of exercise or worsening of general symptoms after increased activity, and discoloration of the hands and feet.

Overwhelmed? Try dealing with this condition every day, especially when you haven't gotten an official diagnosis and have no clue what could be wrong. 

Cheryl said one of the scariest things about watching Sara deal with POTS was watching "her quality of life going down."

"She was down to 88 pounds and withering away. She couldn't walk around the house, she couldn't walk to the back of the yard, and everyone was saying she was fine," Landstrom said. "That was scary, super scary."

The lack of research for POTS is incredibly alarming and dangerous for those who suffer through it. Those who suffer from POTS are not advised to give blood, but last year I was in a position where the doctors and volunteers weren't well-educated on the subject, and I was almost allowed to donate. Thankfully, we caught it just in time, but I wasn't aware that giving blood could be very dangerous for me.

Sechrist said that, while there hasn't been much research in the past, a group called Dysautonomia International Organization has been recently encouraging funding, research and awareness of dysautonomia and POTS.

"Dysautonomia International was kind of founded by volunteers, just to try to help kind of increase awareness of a disorder that a lot of medical professionals were never taught about," Sechrist said.

Medical professionals need to be well-educated on this syndrome, as it greatly affects those who suffer from it, causing a decline in the quality of life. It's not fair for us to be terrified for our health at such a young age.