TikTok saved her life — now she’s paying it forward

Story by Nicole Moorefield

Photography by Ronan Brown 

Lauren Kelly was born with dance in her veins.  

She started when she was 2 and continued dancing competitively — ballet, tap, jazz, even going en pointe — until mid-2020. Her favorite was tap; she aspired to become a dance major and go on Broadway. 

“But, no,” she said, “that was not what was meant to happen.” 

In the past five years, Kelly has undergone six surgeries to correct the many diagnoses she’s collected, ranging from scoliosis to several extremely rare compression syndromes. 

These health conditions significantly impact Kelly’s quality of life and, if left untreated, can be deadly. But she has spent the last five years fighting for each diagnosis, with many doctors dismissing her concerns, unable to treat her and even accusing her of having an eating disorder or faking her condition. 

Through her battle with these illnesses and the barriers to treatment she’s overcome, Kelly found a new purpose: helping people like her get their correct diagnosis.  

She finds them primarily through TikTok.  

She uses the platform to assist others and to update her followers on her journey, but also to post dancing videos just like other users her age. Hers just happen to be in hospital rooms more often than not — because that’s the reality of her life. 

One of her most popular videos, with more than a million views, uses dark humor as a coping mechanism. She says the plans she tells people she has for her future — going to nursing school — are just that: what she tells people. What are her real expectations? The video turns to pictures of headstones, one of which reads, “I TOLD you I was sick.” 

That signature dark humor helps Kelly cope with the emotional toll of chronic illness. 

“She woke up from one emergency surgery,” Kelly’s roommate and friend Hanley Boardman said, “and the first text that we get was, ‘I couldn’t die because I can’t give you the bedroom with two windows.’” 

But aside from being a space to educate and to vent, Kelly also uses her platform to pay forward the gift she was given two years ago — TikTok is where she herself was first “diagnosed” by a fellow compression syndrome patient. 

That motivates her to keep going — even when TikTok’s algorithm takes down her videos for “child endangerment” because she shows her feeding tube, or when it gets hard to be so vulnerable on the internet. 

“There are so many other people out there that are in such a similar situation,” she said. “If you don’t reach out to them, who’s going to do it?” 

“Something is not right” 

Kelly’s journey began in 2017 when she was diagnosed with scoliosis as a freshman in high school. After undergoing spinal fusion surgery her sophomore year, she began experiencing severe stomach pain and vomiting in 2019, resulting in extreme weight loss, and heart issues, migraines and dizziness. 

Doctors said she had developed postural orthostatic tachycardia syndrome (POTS). It explained some symptoms, but physicians were baffled by others. 

She spent the next year fighting for another diagnosis. Frustrated by her treatment in the medical system, Kelly began documenting her journey on TikTok. The social media platform was still relatively new, and Kelly had no expectations; it was an outlet to share with anyone who would listen. 

But the algorithm began boosting her content to people with similar symptoms. 

“I started having people connect with me that I popped up on their For You page,” Kelly said. 

Meanwhile, as her health got worse, Kelly was trying not to despair. She said doctors too often dismissed her concerns. 

“In your gut, in your soul, you’re like, ‘I know my body, I know something is not right.’ But to try to get that across to doctors, to try to get that across to anybody is really hard,” Kelly said. 

She was in a Best Buy when she received a message that sent her heart rate skyrocketing. 

It was from LewLew Whayne. She, too, had struggled with finding a diagnosis. She had seen Kelly’s videos, and could she give her a call? 

“I was like, ‘Why is this random girl texting me? Like, no, I have anxiety, I don’t want to talk to somebody over the phone,’” Kelly said, “and so I texted her back, and she was like, ‘I think you have MALS.’” 

In median arcuate ligament syndrome (MALS), a ligament compresses the celiac artery, causing chronic abdominal pain.  

Whayne’s help “truly saved my life,” Kelly said, “because I don’t know what we would have done if that never would have happened.” 

In November 2020, Kelly underwent surgery to correct MALS, but with compression syndromes, it was likely the battle wouldn’t end there. 

“Vascular compressions are like a clogged pipe,” Kelly said — if you have one clog, you probably have another. 

In June 2021, she was diagnosed with superior mesenteric artery syndrome (SMAS), in which her artery was compressing the upper part of her small intestines. She went into surgery again. 

In October, Kelly and her family found a team in Baltimore, Maryland, that could diagnose her with May-Thurner syndrome (MTS), in which an artery compresses a vein in the pelvis, and nutcracker syndrome (NCS), where two arteries compress a vein in the kidney. 

On the drive with her mother, Amy, to Baltimore from North Carolina, Kelly passed out at a gas station. Once they were back on the road, she started seizing and couldn’t breathe. They were somewhere in Virginia. Amy took the first exit with a “hospital” sign. 

At the ER, doctors didn’t believe her lab values could be as low as the tests showed, so they kept ordering new tests. They transferred Kelly to a nearby hospital. Eventually, they left against medical advice — Kelly still in a hospital gown — and continued their journey to Baltimore, where the doctors would know what to do. 

Once she was stable enough, they tested for MTS and NCS. It was a complicated and painful process but gave her the results she needed for the diagnoses. She would need yet another surgery. 

Kelly’s team could perform the procedure in December. In the meantime, she had to get a central line to her heart, a dangerous kind of catheter through which she would “eat” through her heart using total parenteral nutrition (TPN), as her digestive system wouldn’t work anymore. It was critical that Kelly not have this for an extended period, as the risk of infection was high. 

Outwardly, Kelly remained positive. 

“I don’t think she wants anyone to ever see her struggling,” Boardman said. 

Boardman has Ehlers-Danlos syndrome and a feeding tube, which the two bonded over. Kelly said it helps to have a roommate who understands her health struggles. 

But sometimes, Boardman has seen that cheerful facade crack. 

She was in the room when, two weeks before it was scheduled, Kelly got the call that her surgery had been canceled. The hospital had parted ways with her surgeon and shut down the clinic. 

“Her face just broke and she stood there sobbing,” Boardman said. 

The kidney autotransplant she needed is such a rare surgery that most hospitals don’t have surgeons with expertise. Kelly wasn’t a candidate for most centers in the U.S. because of her medical history.  

She thought she had found a match at the University of Colorado-Anschutz, but at the last minute, they denied Kelly because she was on TPN. 

“That was genuinely the worst day of my life because at that point I thought I had exhausted all options,” Kelly said. “I was like, ‘Literally everybody gave up on me.’” 

At long last, in June 2022, they were able to find a team at the University of Wisconsin at Madison that could perform the surgery in July. 

Kelly and her mother moved to Wisconsin. She had started at UNC almost a year earlier and was taking 11 credits with a medical underload through all this. 

The day came for her surgery, a straightforward procedure in which they would move her left kidney to her right side. 

Her friends who had been through the same procedure warned her that vomiting, fevers and intense shaking were part of recovery, so she assumed those signs were normal. 

But when she wasn’t improving, doctors found that her white blood cell count was shooting up, indicating infection. A CT scan showed that her kidney was not getting any blood. 

They rushed Kelly into emergency surgery. Just before she went under anesthesia, “I was like, ‘Something is not right,’” she said. “And that’s the last thing I remember.” 

She had a severe infection in her abdomen that was eating away at the new connection they had made in the previous surgery. She started to bleed out. 

The drains they had connected to her sides, meant to draw out the infection, began to fill with blood instead. 

Her surgeon was able to press his finger into her artery to stanch the bleeding, saving her life, but they lost her kidney — and she lost a lot of blood. She spent the next few days in the ICU. 

“It was a really hard recovery, but most people don’t survive that, so I’m entirely grateful,” she said. “They were fully expecting me to be on a ventilator and not to survive.” 

Of the over 150 kidney autotransplants conducted at UW Health, Kelly was the first case that had ever happened to, the only person to have lost their kidney and the longest-staying person for that surgery. 

“It’s very scary to get a text in all gibberish and then her mom being like, ‘Her artery gave out,’” Boardman said. 

The journey continues 

In September, Kelly was able to return to Chapel Hill. She’s only been able to attend class in person about five times this semester, and it took a fight with the university to only be enrolled in six credit hours, but her professors all give virtual options. 

She had her gallbladder removed in October, her sixth surgery. Recovery was slow and, just when she thought it was improving, things took a turn for the worse. She is now working with her team at Duke to create a plan. She will spend this holiday season again searching for answers. 

Her dream is to work as a pediatric transplant nurse at Duke before one day moving to Wisconsin to work at the hospital that saved her life. 

Kelly’s TikTok account now has more than 166,000 followers and 4.5 million likes. 

When a video brings new people to her page, she links them to her Instagram where they can chat more directly. 

“It is always really encouraging when I do get DMs because people are like, ‘You helped me find my diagnosis,’” she said. 

If she had to ballpark, she would say a few thousand people have at least been able to talk to their doctor about a condition they learned of through her. She stays in touch with a group of these individuals, 10 people all around her age. 

Heartbreakingly, that number used to be a little larger. Kelly has lost peers to the depression that often accompanies chronic illness, including one this year. 

“When you’re constantly invalidated like that, you turn to yourself and you’re like, ‘What if I’m crazy? What if it is actually all in my head?’” Kelly said. “And you go down such a dark path if that’s what you truly believe because you’re like, ‘I’m insane, nobody believes me, life’s not going to get better, why don’t I just stop?’ 

By connecting with other compression syndrome patients, “You’re constantly reminded, “Hey, there are other people like me,’” she said. “It’s a nice source of validation when basically the whole world isn’t validating you. Because when everybody is telling you, ‘No, you’re crazy,’ it feels like the whole world gave up on you and it’s truly awful, the worst feeling I’ve ever felt.” 

One of those people like her is Jordan Leslie. 

They connected because they had the same surgeon in Winston-Salem and became fast friends. Leslie and her mother also work to help others get their correct diagnosis. 

Like Kelly, most compression patients have three to five surgeries and need central lines, feeding tubes or IV fluids, Leslie said. But Kelly isn’t most patients. 

“In the sense of bleeding out on an OR table, getting an infection that erodes your artery, no, that is not normal at all,” Leslie said, estimating that Kelly is among five to 10 cases out of thousands to have that outcome. 

“Despite the fact that she’s gone through all this, she’s made something good out of it,” Boardman said. “Not a lot of people will be trying to help others while they’re fighting for their own life.” 

In return, Kelly has found community. Through her trials, the patients she’s met along the way stand by her side. 

And her dance studio from back home is still cheering her on.  

“The owners are basically my second parents,” Kelly said. “Even though I’m not dancing anymore, I still have that support.”