MARTINSVILLE, Va. -- Wherever she goes, Rylee Joyce beams charming humor. On the good days, she feels like a normal 16-year-old, who used to dance and perform on stage, but these days the bad ones win out more often than not.
"She says it’s like caging up the Tasmanian Devil," Rylee said of those good days, smiling toward her mother Dee. “I feel like I can run! I feel like I can fly! And then the next day, I’m like, ‘Oh, I should not have done that.’”
Rylee was diagnosed with long COVID more than a year and a half ago.
Most of the time, the 16-year-old is so exhausted from the condition she requires a walker to get around.
“When I first got the walker I cried. I was like, ‘Oh my gosh, I’m going to look 80!’ And I still do," Rylee said. “If I didn’t have hope it would just be so sad, I’m not going to lie. I’ve had people tell me: ‘It’s going to go away in your 20s.’ I’m like 20s! Excuse you. What?! That long.”
“Extreme fatigue, the coughing, the vomiting, and she could hardly walk then. It’s like everything was amplified," Dee said about when the symptoms first began.
In January 2022, Rylee got infected with COVID-19 for a second time. The following month, the symptoms of Long COVID began.
Every doctor they went to could not give them answers, even though Dee had been collecting data on Rylee's condition.
The Joyce family said they felt ignored.
“This isn’t going away; we need somebody to listen to us now. Two years of having extreme fatigue and vomiting and migraines and body aches and pains. I mean imagine getting COVID every week, every week of your whole entire life," Dee said. "They kept saying she’ll eventually get over it, kids are resilient, there’s not enough data. That was really important for me. I was like, okay well, I’m going to get you data.”
Little is understood about Long COVID, who is likely to get it, and how it will manifest in a person.
"Long COVID is a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19. Most people with COVID-19 get better within a few days to a few weeks after infection, so at least four weeks after infection is the start of when Long COVID could first be identified," according to the CDC.
"I feel like kids get dismissed a lot: they’re resilient, they’ll be fine. But, they’re not fine, and we see that a lot," Laura Stevens, an RN with the VCU School of Nursing, said.
Stevens and VCU are part of a national study that is examining the impact of Long COVID on children, teens, and young adults.
The RECOVER project aims to rapidly improve the understanding of and ability to predict, treat, and prevent Long COVID.
Rylee is one of 250 taking part at VCU and more than 10,000 young people nationwide.
“When I joined the study, I didn’t know about long COVID. So, I was like, how many kids really have Long COVID? But, I mean weekly. We see kids weekly," Stevens, who believes Rylee's case is the worst she's seen, said.
Many of the young people Stevens has worked with show the classic signs of Long COVID, but persistent fatigue and brain fog appear to be recurring indicators, she said.
"Exercise fatigue, like kids that were athletes we see this a lot. We have a kid that was a rower, and he can’t row anymore because he can’t catch his breath, or walk up stairs," Stevens said. "At school, brain fog is a really huge thing. We’re seeing a lot of kids having to get IEPs and special circumstances to take tests at school because they just get too tired to take tests.”
With many healthcare professionals still in the dark about Long COVID, Stevens said there are a lot of young people likely suffering there too.
“I hope this study will raise awareness so people don’t have to suffer alone, and then, of course, I hope the data we collect nationwide will contribute to some hard science that can help people," she said.
The RECOVER project is in the phase of collecting data and will soon begin analyzing it to try to find potential commonalities in cases and trends, Stevens said.
A long-term study like this will not produce answers for several years, but Dee Joyce is thankful the data she helped collect will go to help others.
"It’s sad. It’s taken a lot away for us for sure," Dee said. “[RECOVER] gave me hope that we’re being heard and that they’re putting the pieces together."
For now, Rylee districts herself with her dogs, family, friends, and hobbies, like collecting vintage glassware.
"When we have company, I’m like, ‘Yo, check this out.’ And they’re like, ‘Ah, glass!'" Rylee said.
Long COVID has taken her teenage freedom but not her charm.
"It’ll be nice to just like know some of the things that are wrong with me, maybe something that was overlooked throughout the entirety of it. Like, ‘it was broccoli all along! Just pump yourself full of broccoli.’ If that was the case, shew," Rylee said with a wry smile.
"You would eat broccoli?" Dee said.
"Yeah, and that says a lot," Rylee replied, both chuckling.
VCU and the RECOVER project continue to accept patients and families. You can apply online and learn more here.
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