Sarah Komar, Arkansascovid.com
Skye Harris, a healthy, happy 18-year-old Rogers native, was enjoying a vacation in June when her head began hurting and she started feeling like she had a cold. On her way to the drug store, she collapsed, seized 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 or seven times, eventually testing positive for COVID-19 and being diagnosed with functional neurological disorder.
“Basically, whenever I get overstimulated or excited my body takes it out physically,” Harris said. “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. So I walk with a cane a lot. And 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.”
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,” although recent discoveries might provide some hope to 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. These can include symptoms similar to active infection or additional ailments like neurologic, lung and heart disorders. Preliminary evidence suggests that those with PASC, also known as long-haulers, might be more likely to develop autoimmune diseases and postural orthostatic tachycardia syndrome (POTS), a condition that affects blood circulation and heart rate.
Researchers led by Destin Groff, Ashley Sun and Dr. Anna Ssentongo found the median (IQR) rate of those experiencing symptoms six months after infection was 54% when they performed a literature review of 57 studies comprising more than 250,000 COVID-19 survivors. The review was published Oct. in JAMA Open, the American Medical Association’s open access medical journal.
The most common symptoms identified were neurological disorders including difficulty concentrating and memory problems, lung function issues and abnormalities on lung scans, fatigue and muscle weakness and mental health disorders like anxiety and depression.
After her diagnosis, Harris lost the ability to drive and had to close down the food truck she operated in Northwest Arkansas because of her illness. She has made countless visits to specialists and participates in physical therapy and cognitive behavioral therapy twice a week.
Researchers at the University of Arkansas for Medical Sciences, led by Dr. John Arthur, recently made progress toward understanding what causes PASC. They think some survivor’s bodies overproduce an antibody that attacks ACE 2, a protein on the surface of many cells, and leads to the buildup of a hormone that causes the immune system to attack the body. No other known virus triggers this antibody, Arthur said.
Aurthur has been moved by the stories of COVID long-haulers whose lives have been devastated by the illness, and it has spurred his passion for the research, he said. Although the best way to avoid getting PASC is to protect oneself from getting COVID through vaccination and masking, there is hope for those currently suffering, Arthur said. The team hopes to begin treatment trials soon that could help reduce levels of the harmful antibody in patients. Long-haulers 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. 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, brain fog that made it impossible to complete simple tasks, and a lingering loss of taste and smell, he said.
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 who had few answers, and focusing on living a healthy lifestyle, Seidholz said his symptoms cleared up on their own.
“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. 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 knows her disability will likely last years or a lifetime, she said. 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’s also things that push me forward. So I’m not going to stop my life for something that can also push me forward.”