Editor’s Note: Warning that this article contains graphic images that may be disturbing to some readers.
Kara Carpenter trembled in the backseat of her brother’s car, wrapped in her brand-new sleeping bag. No amount of layers could stop the chills. Every part of her ached, her stomach churned and she couldn’t shake the feeling that something was horribly wrong.
It was Thanksgiving week 2021, and she and her brother were deep in the Ouachita Mountains of Arkansas, off the grid and backpacking like she used to love. But this night wasn’t like the others. The usual thrill of the wilderness — the crisp air, the quiet — had turned threatening.
“I’d never felt anything like it,” she tells PEOPLE exclusively.
Within a day or two, Carpenter, who’s originally from Austin, Texas, realized she couldn’t wait it out. She, her brother and his dog Nim abandoned the trip and booked a night at the nearest hotel in Little Rock, hoping a hot shower and some rest would help. But leaving the backcountry was grueling.
“It was 10 o’clock at night, pitch black, bumpy dirt roads. My brother had to pull over several times so I could cough or throw up,” she recalls.
The hotel offered little relief. Carpenter, 31 at the time, woke in excruciating pain — “maybe a nine or 10” as she describes it — and noticed blisters forming around her mouth. They rushed to a freestanding emergency room on Nov 24, 2021, realizing this was far more than a typical camping illness.
In the ER, tests ruled out strep and COVID-19. Doctors diagnosed her with a urinary tract infection (UTI), an unspecified strep virus and pink eye — but dismissed the possibility of a systemic problem. To them, she looked healthy: a young woman with just a few mouth blisters and bloodshot eyes. They discharged her with antibiotics, leaving her to confront the intensity and mystery of her illness alone.
But once back at the hotel, Carpenter’s symptoms quickly worsened. “It had begun to feel like I was swallowing razors,” she says.
Carpenter called the ER multiple times overnight, desperate for help, but was told the medicine would take a few days to start working. Meanwhile, her brother drove to CVS repeatedly, picking up a humidifier, cough drops and Chloraseptic spray.
For the rest of the night, Carpenter spent hours in the steamy bathroom, trying to soothe her throat, but nothing helped.
“I’ve never given birth, but that’s the closest thing I can compare it to,” she continues. “When you have a sudden health crisis, it’s like jumping off a diving board — you know something is seriously wrong, but there’s nothing to do except lock in.”
“You lean into the present moment because it quiets everything else,” she adds. “All the background noise fades, and you give this health issue 110% of your focus.”
The next day, the siblings drove about an hour to a hospital in Hot Springs, Ark., trying to find doctors who would take her seriously. Her brother had to pull over multiple times on the freeway so she could vomit.
By this point, Carpenter’s body was showing severe signs of illness: more blisters inside her mouth, swollen lips, reddish-tinted skin, a spreading rash and a swollen “moon face” from steroids. When they arrived at the new hospital on Nov. 25, 2021, staff rushed Carpenter straight to triage.
“I didn’t even give them my insurance information,” she recalls. “We walked through the doors, and 10 seconds later, I was in triage. I was calm because in survival mode, your body and mind focus, you present capable and articulate even when everything is falling apart.”
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At the hospital, her eyes had become so bloodshot she couldn’t see the whites of them. “I started to resemble a zombie,” she says. “I looked at my iPhone, one of the last times I remember seeing my face, and I thought, ‘This is not okay.’ ”
The pain also became unbearable. Carpenter describes it as if someone had set her eyes on fire. Nurses brought saline drops, which barely alleviated the agony. Typically polite and respectful in medical settings, she found herself shouting in the hallway, demanding help: “My eyes are on fire! It feels like there’s a frying pan on them! Someone has stepped on my eyes!”
Shortly after, everything went dark.
“I completely lost my vision,” she says. “I experienced hospital delirium because my body and brain were in shock, and I actually thought I was still camping. I would feel around with my hands and tried to find my way, convinced the nurses were out to get me. I wanted to get to my campsite. My brain was trying to take me back to the last place I felt safe — camping with my brother and his dog.”
For several nights, doctors struggled to diagnose her. Infectious disease specialists were called in, considering possibilities like hand, foot and mouth disease, but her actual diagnosis remained unclear.
Since her father is a physician, Carpenter’s family knew how to activate crisis mode. He and her four siblings researched her symptoms, consulted their networks and put all hands on deck to figure out what was wrong. Through FaceTime calls with her father and sister, they suggested Stevens-Johnson syndrome, or SJS.
Stevens-Johnson syndrome (SJS) is a rare, severe and potentially fatal allergic reaction that can cause widespread rash, blistering and peeling of the skin and mucous membranes. It is typically triggered by medications, such as antibiotics or anti-seizure drugs, and sometimes by infections.
“I had never even heard of it before,” Carpenter says.
Despite being on multiple medications around the time she fell ill, and having a negative reaction to the COVID-19 vaccine, doctors initially didn’t believe Carpenter had Stevens-Johnson syndrome. But eventually, the medical staff confirmed the diagnosis, and her care quickly followed the standard treatment protocol, which requires specialized treatment in a burn unit.
She was airlifted in the middle of the night on a small medical aircraft with six paramedics to a level-one trauma center in Houston, Texas. Within hours of her arrival, she underwent her first ocular surgery.
“This syndrome attacks the mucosal lining of your body, which covers all your insides and organs,” Carpenter explains. “It’s like you’re burning from the inside out. The mucosal lining is most concentrated in your mouth, eyes and genitals, which is why early intervention is critical. Without it, scar tissue can permanently damage your eyes or mouth — which at the time was already happening to me.”
“My skin was sloughing off in sheets,” she adds. “I remember touching my ear and seeing chunks of skin come off in my hand.”
Carpenter spent the next 28 days in the ICU, her body in a state of constant crisis. Her eyes were especially at risk, so doctors performed an amniotic membrane graft, sewing donated tissue onto her eyes and stitching them shut to protect them as scar tissue formed on her corneas and eyelids. Every blink threatened to cause further damage.
There was no way to stop Stevens-Johnson syndrome once it had taken hold. All doctors could do was manage her symptoms and hope interventions would limit the destruction. She was sedated and given some of the strongest painkillers available — morphine, a continuous ketamine drip, Dilaudid and methadone — the kind of regimen typically reserved for cancer or hospice patients.
“Blood was coming from my mouth, nose and ears,” she recalls. “My skin was peeling, and I was wrapped from head to toe in silver burn dressings. If a zombie and a mummy had a baby, that’s what I looked like.”
Because her mouth and throat were burned, she couldn’t eat. A feeding tube, catheter and PICC line kept her alive, while her skin — the body’s largest organ — continued to slough off, leaving her highly vulnerable to infection.
Without her eyesight, Carpenter relied on her other senses to keep her grounded.
“I could sense when a nurse was sad or when the vibe in the room shifted. I decided I didn’t want to die. I chose to fight because I could feel all the love surrounding me. Sometimes I faltered, but family visits kept me going.”
“Although I didn’t have my eyesight, I still remember every visitor that came and saw me,” she adds.
For most of her ICU stay, Carpenter remained on strict bed rest. Daily injections in her stomach to prevent blood clots left her legs weak, almost forgotten. So, even before her vision began to return, her body had to relearn how to move.
“It was excruciating to walk with a catheter and in pain, but I had some really bossy physical therapists who were determined I start moving,” she says. “They said, ‘I don’t care if you hurt, you’re going to start walking.’ ”
Slowly, she began to take steps with a walker. Around the same time, her eyesight returned in fragments. She remembers being alone with one of her nurses when the wounds and mucus had receded enough that the world looked really fuzzy.
She also found unexpected motivation in the burn ward’s bell — a symbol of survival she had only ever heard cancer patients ring.
“I had no idea burn wards had bells too,” she says. “Every day, when my physical therapist walked me around the ward, I’d see that bell and think, ‘Someday I’m going to get to ring it.’ ”
That day came on Dec. 23, 2021, when Carpenter was finally discharged from the ICU, just in time to surprise her family for Christmas.
“The moment felt so much bigger than me,” she recalls. “My mom — like every mom, the default camera woman — got this janky video, and all my nurses and staff gathered around. I had lost my confidence through the whole experience, so I gave the bell this shaky little ring. But one of my nurses stopped me and said, ‘Nope, go back and ring it again.’ ”
She continues, “So I did. And then I found one of my doctors in the hallway and gave her the biggest hug.”
However, leaving the ICU wasn’t the happy ending she imagined.
Carpenter thought life would be “sunshine and rainbows” after surviving the impossible. She had even made a will while in the ICU in case she didn’t make it. But the first year out was brutal. There was no roadmap, and the disease still lingered. Her body was in constant recovery, and her eyes — the most severely damaged — became the focus.
“They hurt so badly I couldn’t take care of myself,” she recalls. “I mostly lived in bed. I even began white cane training in case my surgeons couldn’t restore my full vision.”
That year brought more operations, endless appointments and a desperate search for new treatments.
She began independently researching state-of-the-art options and calling specialists across the country. That’s how, in June 2022, she found out about autologous serum drops — eye drops made from a patient’s own blood plasma — and jumped at the opportunity to try them.
Around the same time, when her eyes were at their worst in spring 2022, her doctor scheduled an emergency surgery. She had already met the anesthesiologist and was hooked up to an IV when everything changed. She had started the blood-based drops just the day before, and to everyone’s shock, they spurred enough healing on her corneas that the surgery was canceled on the spot.
The following month, Carpenter was fitted with Prosthetic Replacement of the Ocular Surface Ecosystem, PROSE, lenses — highly specialized scleral lenses that vault over the eye and are filled with saline to protect and promote healing.
“They cost nearly $10,000 and required two weeks of training to use. But they were life-changing,” she says. “That’s when things turned for the better. They reduced my pain and created a constant state of healing. My eyes just can’t survive in plain air anymore — the lenses gave me back function.”
“I did two weeks of training to learn how to use them,” she adds. “But essentially they’re filled with saline and they suction into my eye. I use little mini plungers to put them in and take them out.”
With her eyes stabilized, she was finally able to focus on her body. Months of bed rest had caused her to lose 30 pounds and left her muscles severely atrophied. Physical therapy was grueling, and emotionally, the endless cycle of appointments took a toll.
“I have PTSD from the ICU — nightmares, flashbacks. Going to the doctor’s office felt like walking back into the thing that harmed me,” she explains. “I’d spend the whole day in bed afterward, just reliving it. I must have had 50 to 100 appointments that first year, with at least 30 or 40 different doctors. It was overwhelming.”
Still, Carpenter looked for ways to reclaim pieces of herself outside of medicine. As a child, she had dreamed of learning guitar. She’d even bought one in seventh grade but never played. “During recovery, I kept thinking — maybe it’s finally time,” she says.
The week her eyesight was mostly restored, she bought a guitar and signed up for lessons. For someone who had spent a year in darkness — literally, since she couldn’t let sunlight touch her burned skin — guitar became her lifeline.
“It was like a baby step into the outside world,” she recalls. “It healed my heart in ways I couldn’t imagine.”
Soon she added yoga, sound baths and other practices that helped her reconnect with her body and spirit. Around the first anniversary of her illness, she took her first flight since being life-flighted — a trip to California simply to “smell the ocean.” Though she needed her sister’s help and was wracked with fear, it lit a spark: she could travel again.
That fire grew in Mexico in 2023. In a humid surf town called Sayulita, Carpenter experienced something miraculous: for the first time in nearly two years, the climate soothed her skin and eyes.
“No one there knew anything had ever happened to me,” she says. “I did more trauma healing in that one trip than in all those doctors’ appointments.” Her guitar came everywhere with her — “my emotional support stuffy,” she jokes — even on planes. Before long, she was performing three songs at an open mic, cheered by strangers who only saw her as a singer, not a survivor.
Just as life was opening up, Carpenter’s body shut down again.
By late 2023, she developed severe stiffness and frequent falls. In December, she was diagnosed with rheumatoid arthritis, likely triggered by the immense stress her body had endured. Powerful drugs offered hope for remission, but her system — already hypersensitive from SJS — reacted badly. One medication, Plaquenil, caused her skin to peel, landing her back in the hospital.
“It was a total bummer because I had just had this fairytale-ending Disney moment, and then my whole body started stiffening up,” she says. “The good news is that rheumatoid arthritis has really powerful treatments to put it into remission. The bad news? Ever since Stevens-Johnson syndrome, my body is hypersensitive.”
“I’ve never had allergies before, and now I’m basically allergic to the air,” she adds.
Carpenter has tried seven or eight medications to manage her rheumatoid arthritis, each with its own complications. But this setback taught her something crucial: healing is not linear.
“Sure, it would’ve been nice to live the rest of my life on a beach in Mexico with my guitar — and maybe I still will,” she says. “But clearly I’m meant for something else right now. Whether it’s raising awareness or advocating for people’s health, I still have hope. I believe I’ll get better. Sometimes the path isn’t straight — but I’ll find my way back to that beach.”
It was during this time that Carpenter, now 34, began opening up about her SJS diagnosis and health journey on TikTok.
“Surviving SJS was the loneliest, most painful, and proudest thing I have ever done,” she says. “I’m not going to be silent about my greatest achievement just because health problems are sometimes seen as something to hide. I share my story so that other people struggling with their health don’t feel so alone and to honor those who didn’t survive.”
“You could interview dozens of other people with Stevens-Johnson syndrome and I would bet money that all of their stories would sound almost identical to mine,” she adds. “They would all have several days go by where their organs are on the verge of shutting down, and they don’t even have a diagnosis.”
Since opening up, she’s reached millions of people with her story.
“My first year was so hard. I didn’t get proper treatment so I had discolored, painful skin for months, and felt like I had the flu all the time. I’m so glad I’m not the only one who made it,” one user commented on Carpenter’s TikTok.
“You’re such a warrior ❤️❤️❤️So strong you did that you healed you prevailed!!! Don’t ever forget how strong you are!!!!” another person wrote.
“This comment means so much to me. It was hard for me to make this video,” Carpenter replied to them.
Looking ahead, Carpenter hopes to find an effective treatment for her rheumatoid arthritis and dreams of one day writing a book about her journey.
For now, her focus is on raising awareness about Stevens-Johnson syndrome on social media. The condition is so rare that even some medical professionals lack experience with it, and early misdiagnosis can be deadly.
“It’s not about staying busy anymore — it’s about staying grounded and present,” she says. “I don’t know what the future holds, and I’ve had to learn to lean into uncertainty. Living with health that can change drastically by the hour has taught me that.”
“I’ve changed so much in the past few years because I had to,” she adds. “If someone said, ‘Starting tomorrow, nothing about your life will look or feel the same again,’ what would you do? You’d change. I changed because I didn’t have a choice.”
