Long COVID and long haulers

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Madison Sharp wears a mask anytime she’s indoors. Sharp said although the mask mandate at BYU ended over a year ago, she doesn’t want to spread or catch the virus again. (Megan Zaugg)

Three years ago, the world shut down due to the COVID-19 pandemic. These days, things have reopened and, to a degree, have returned to pre-pandemic normalcy.

However, for people like BYU student Madison Sharp, the effects of COVID-19 are very much still relevant. Sharp was diagnosed in May 2021 with post-COVID conditions (PCC), or long COVID.

The Centers for Disease Control and Prevention classifies long COVID as a series of “long-term effects from the infection that include a wide range of ongoing health problems that can last weeks, months, or years.” Symptoms of the condition include fatigue, post-exertional malaise, difficulty breathing, heart palpitations, neurological complications and more.

Patients of long COVID, like Sharp, are often referred to as “long haulers.” In fact, in July 2021, long COVID was added as a recognized condition that could result in disability under the Americans with Disabilities Act (ADA).

While serving as a missionary for The Church of Jesus Christ of Latter-day Saints in the Alpine German-speaking mission in January 2020, Sharp became sick. At the time, she assumed it was a simple cold, but Sharp ended up with a cough she couldn’t shake. Doctors chalked it up to asthma and she carried on with her mission before being required to return home in March due to the pandemic.

“I was in Germany so I could see, like, there were cases that were happening, but I didn’t know anything about it.”

Madison Sharp

“I was in Germany so I could see, like, there were cases that were happening,” Sharp said, “but I didn’t know anything about it.”

Shortly before returning home from her mission, Sharp said her parents and siblings tested positive for the virus. Several months later, Sharp and her family members underwent antibody testing. Though her family had short-term antibodies for the virus from their more recent exposure, she discovered that she had long term antibodies in her system, meaning her mysterious sickness from January had likely been COVID-19.

However, Sharp isn’t the only one in her family dealing with post COVID conditions. Her parents and siblings have all dealt with it as well.

“I watched my mom almost die,” she said. Sharp described her mom as young and healthy. However, after COVID-19, her blood pressure spiraled, and she experienced cognitive complications. “She started slurring her words.”

Sharp said when she was infected with the virus itself, her symptoms weren’t much different than a common cold. “I was more tired,” she said.

Madison Sharp is a BYU student, studying German. Sharp was diagnosed in May 2021 with post-COVID conditions (PCC), or long COVID. (Megan Zaugg)

However, as time went on, she developed other issues. “I had a really hard time focusing,” she said. “Before my mission I was a straight A student, but I could not get any better than a 50% on a test … I was like, ‘something’s wrong with me.’”

Along with difficulty focusing, Sharp experienced depression, anxiety, rapid heartbeat and shortness of breath. She also participated
in a cardiovascular study at a VA hospital where she was told her cardiovascular system looked 10 years older than it was.

“My heart would beat really fast, and I felt like I had anxiety all the time,” Sharp said. “I was like ‘I feel like I should be running from a bear but I’m not.’”

Jeanette Brown, director of the University of Utah’s long COVID clinic, said such symptoms are common in long COVID patients, but that it’s difficult to pinpoint the conditions. “There are definitely some patterns, but there’s a lot of individuality for how those manifest, so it’s been kind of a learning experience,” Brown said.

Brown said some emerging trends show that women are more likely than men to be affected. She also said the average age of patients at the clinic is 47 but they see patients as young as 18.

According to Brown, there is no shortage of individuals dealing with long COVID, and around 20% of adults who had COVID-19 also experience long COVID conditions, based on CDC estimates. “We typically get about 105 referrals a month,” Brown said. “We’ve seen 1800 patients since we opened in July of 2021.”

Brown also said their data shows that most patients of long COVID had the virus before vaccinations were available. “We do have data that shows you’re less likely to be a long hauler if you’ve been vaccinated.” For the most part, Brown said many of their patients are relieved to find a source for their symptoms and finally receive treatment.

“Just knowing you’re not crazy makes the biggest difference,” Sharp said of her own diagnosis.

Sharp said she and her family members didn’t see much improvement with long COVID symptoms until participating in cognitive therapy at Cognitive FX, a post-concussion clinic in Provo, during October 2021. Brain scans showed what appeared to be brain damage due to the virus, according to Sharp.

“I do have ADHD,” Sharp said, “but all of my symptoms were exacerbated by the fact that COVID messed with everything.”

In fact, Brown said as the clinic has continued research with long COVID patients, the deficits they see are primarily in attention. “If you can’t pay attention, you can’t make a memory,” she said.

Brown said the clinic has been working with Utah Rep. Melissa Ballard, R-North Salt Lake, to receive government funding to continue research, care and to teach other primary care providers about long COVID treatment. With approval, $4 million will be allotted to fund the efforts for the next four years, she said.

According to a research snapshot by the clinic, patients with long COVID struggle to work and may lose health insurance. The funding will be used to increase care capacity for uninsured and underinsured patients, improve access for rural communities and areas in Utah with low health improvement index.

Although BYU ended its general mask mandate Winter 2022, Sharp still wears a mask anytime she’s inside a building. “I always wear a mask inside because I know what this virus can do,” Sharp said. “I don’t want to get it again and I don’t want to give it to other
people.”

These days, Sharp still deals with the chronic condition and must choose what she has energy to accomplish each day. “I just kind of have to pick and choose, but that’s kind of how it is with chronic pain,” she said. “I do my homework in the morning because I know that’s when I have energy to do it.”

Despite the challenges of being a long hauler, Sharp is hopeful for the future and grateful for available research and treatment.

“I guess this is one of the huge blessings is that you’re getting people who are actually recognizing that autoimmune diseases should be solved,” she said.

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