By Sarah Komar
ArkansasCovid.com
Skye Harris, a healthy, happy 18-year-old Rogers native, was enjoying a vacation in Washington, D.C. in June when her head began hurting and she started feeling like she had a cold.
On her way to a walk-in clinic, she collapsed, and lost her ability to speak and walk. In that moment, her life changed completely.
After returning home from the trip, Harris visited emergency rooms six times, eventually testing positive for COVID-19 and being diagnosed with functional neurological disorder. The disease causes her body to respond negatively when she is excited or overstimulated.
“And that can look like I pass out, lose my ability to speak, have —they’re not seizures, but it looks like a seizure, it’s like a convulsion. Oh, I also lose my vision sometimes, and I have a lot of weakness on the right side of my body,” she said. “So I walk with a cane a lot.”
Harris’ doctors determined her neurological disorder was most likely triggered by her COVID-19 infection. “They think it’s because of COVID, because they used to only see five or six cases of this in teenage girls a year. Now, each hospital is seeing five or six cases a week,” she said.
For many who live through COVID-19, the story doesn’t end when they leave the hospital or their at-home quarantine ends. The pandemic has led to a second health crisis of so-called “long COVID” and people with this condition are known as “long-haulers.”
Long-term COVID, also known as post-acute sequelae SARS-CoV-2 infection or PASC, can cause COVID-19 survivors to experience lingering or new symptoms that negatively impact their lives for weeks or months after infection. Symptoms are similar to an active COVID-19 infection but there are additional ailments such as neurologic, lung and heart disorders.
Preliminary evidence suggests that those with PASC might be more likely to develop autoimmune diseases and postural orthostatic tachycardia syndrome (POTS), a condition that affects blood circulation and heart rate. One review of studies involving a total of 250,000 COVID-19 survivors found more than half — 54% — experienced symptoms six months after the onset of infection.
Researchers led by Destin Groff, Ashley Sun and Dr. Anna Ssentongo of the Penn State College of Medicine measured the median rate of survivors experiencing various maladies in the long term. They reviewed 57 studies and found the most common symptoms were neurological disorders including difficulty concentrating and memory problems, respiratory issues, fatigue and muscle weakness and mental health disorders such as anxiety and depression.
“It’s honestly made me a lot stronger person, so I’m not I’m not too mad about it” – Skye Harris
After her diagnosis, Harris lost the ability to drive and had to close down the food truck she operated in Northwest Arkansas. She has made countless visits to specialists and participates in physical therapy and cognitive behavioral therapy four times a week.
Researchers at the University of Arkansas for Medical Sciences, led by Dr. John Arthur, report progress toward understanding the causes of long-term COVID. They think some survivors overproduce an antibody that attacks ACE 2, a protein on the surface of many cells. This, in turn, leads to the buildup of a hormone that causes the immune system to attack the body. No other known virus triggers this antibody, Dr. Arthur said.
Dr. Arthur said the stories of COVID long-haulers devastated by the illness have spurred his passion for the research. The best way to avoid getting PASC is to avoid getting COVID in the first place, so vaccinations and masks are crucial. But there is hope for those currently suffering, Dr. Arthur said.
Dr. Arthur’s team hopes to begin treatment trials soon that could help reduce levels of the harmful antibody in patients. Long-hauler patients interested in participating can register at arresearch.org.
“One of the main messages I’m trying to get out is that things are going to get better for people,” Dr. Arthur said. “I know that a lot of people are really impacted by this, and some of them are feeling sort of desperate, but things are going to get better.”
Donn Seidholz, a retired private airline executive from Omaha, Nebraska, is living proof that things can improve. After contracting COVID-19 in summer 2020, Seidholz struggled with debilitating fatigue that would come on suddenly. He said he suffered from a brain fog that made it impossible to complete simple tasks, and a lingering loss of taste and smell.
The illness was devastating for the former professional baseball player who was used to working out five days a week and was passionate about eating and cooking. After about a year of visiting many doctors and receiving few answers, Seidholz said his symptoms cleared up on their own.
He partially credits the turnaround on living a healthy lifestyle. “It just takes time and it feels like it’s never going away when you’re going through it,” Seidholz said. “But it does gradually get better.”
“I mean, I just last night made chicken piccata, and actually, it tasted very good,” Seidholz continued. “And I could tell what I was eating and you know, six months ago, there’s no freakin’ way I could have done that.”
With no known cure for functional neurological disorder, Harris said her disability will likely last years or a lifetime. But Harris is staying positive and focusing on the good her illness has brought into her life, including the kindness of strangers, a new understanding of accessibility issues and an increased appreciation for what she has.
“It’s honestly made me a lot stronger person, so I’m not I’m not too mad about it,” Harris said. “You know, there are things that hold me back. But there are also things that push me forward. So I’m not going to stop my life for something that can also push me forward.”