Teen Recalls Being 'Gauzed Up Like a Mummy' After Rare Disease Left Her 'Burning from the Inside Out' (Exclusive)

• At age 8, Paige LaCombe was diagnosed with a rare and life-threatening skin condition called Stevens-Johnson Syndrome.
• The now 19-year-old recalls her long recovery at Shriners Hospital for Children, where she underwent more than 20 surgeries
• She hopes her story will help raise awareness of the condition, which is caused by an allergic reaction to medication

Paige LaCombe had a typical childhood in Scott, Louisiana, where she enjoyed school and extracurricular activities like soccer and dance. But everything changed for her in the second grade.

At just 8 years old, Paige started taking a new drug to help her epilepsy. An allergic reaction to the drug caused a rare and debilitating skin condition that left her hospitalized and fighting for her life.

It started on March 23, 2013, when Paige woke her parents up in the middle of the night complaining of burning and tingling.

“She kept saying she felt like bugs were crawling all over her,” her mother, Renee LaCombe, 40, tells PEOPLE. “We turned on the lights and that’s when we realized. Her lips were swollen, her eyes were completely red, her face was swollen, and something like a rash was developing. In addition, she had a very high temperature.”

“We saw her and immediately took her to the hospital. And then things went completely wrong,” she says.

Paige LaCombe when her SJS symptoms started.

Shriners Children’s

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At the hospital, Paige was initially misdiagnosed with pink eye and strep throat. Her symptoms were getting worse, but doctors couldn’t figure out what was wrong.

“The doctors were silent. That’s when I kind of knew, oh, this is not good,” Paige, now 19, tells PEOPLE. “I very much remember thinking, ‘Am I going to die?’ Because at this point I could see my skin starting to crack. It was so scary.”

“It progressed very quickly while she was in the emergency room, where anyone would touch her, her skin would literally fall off,” explains Renee. “Paige was burning from the inside out. It was something that couldn’t be seen physically, so by the time her skin began to peel, she was already feeling all these feelings inside.”

As doctors struggled to come up with answers, Renee turned to her sister-in-law, a nurse in Texas. Renee sent her photos of Paige and details about her condition. After extensive research, her sister-in-law believed that Paige might be suffering from a skin condition called Stevens-Johnson Syndrome. She recommended the family visit Shriners Children’s Hospital Galveston, Texas.

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Paige LaCombe in the hospital at age 8.

Shriners Children’s

Renee approached Paige’s doctors about the possibility, but they surprisingly “disagreeed” with the diagnosis. So after three days, she made the difficult decision to discharge Paige and transfer her to a renowned pediatric burn center.

“If we had stayed at the local hospital, she wouldn’t be alive,” says Renee.

And right after arriving at Shriners, she got answers for her little girl.

Paige’s diagnosis of Stevens-Johnson syndrome was confirmed. SJS is a rare and serious skin disorder caused by an allergic reaction to a drug.

Symptoms include fever, sore mouth and throat, tiredness, burning eyes, red or purple rashes and blisters on the skin. As these erosions (painful open sores that look like burns) develop, the top layer of the affected skin dies and begins to peel, according to the Cleveland Clinic. Erosions usually spread to the eyes, chest, mouth, nose, throat, urinary tract and genitals.

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Paige LaCombe hospitalized for SJS.

Shriners Children’s

Paige was later diagnosed with the most severe form of SJS, called toxic epidermal necrolysis (TEN), where at least 30% of the skin is affected. In her case, 80% of her body felt those painful blisters. According to the National Institutes of Health, about 30% of people who develop TEN do not survive.

“I was a real mess. I really was,” Renee says of her daughter’s diagnosis. “The first thing the doctors said to us was, ‘This isn’t good, but we’re going to do our best to do everything we can.’ ”

Paige admits she was “completely out of it” due to excruciating pain and doesn’t even remember the three-hour ambulance ride from the local hospital to Shriners. “At that moment, I didn’t feel any sign of relief,” she says. “I regained consciousness for a long time.”

“I finally woke up after, I’m not even sure which surgery, but I opened my eyes to a completely new environment,” she continues. “I saw my parents, I saw the doctors, I looked down and I saw myself lifted up like a mummy. It was scary, but I thought, hey, I’m still alive.”

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Paige Lacombe in the hospital with SJS.

Shriners Children’s

After being admitted to the Shriners, Paige began a seven-year recovery that included more than 20 surgeries. These procedures consisted of extensive wound care including 10 skin grafts using pig skin. She also underwent 11 corneal transplants, which involved using placental tissue and keeping her eyes tightly closed to prevent her from going blind.

Paige missed second grade entirely, and spent third through ninth grade in and out of the hospital. Renee admits that she “still lives with the guilt” that her daughter suffered because of one drug. She did everything she could to give Paige back the life she had lost.

“I saw my daughter fall very, very hard, and we weren’t sure if she would make it. It was horrible. It was very devastating. It definitely felt like I was inside Grey’s Anatomy with the amount of doctors doing the rounds,” Renee recalls. “But I’m thankful that it was a one-stop shop at Shriners and they literally did everything they could to ensure minimal effects after she left the hospital.”

“They were so encouraging and helped me through everything,” emphasizes Paige. “Even though my darkest point in life was at the Shriners, I think of the Shriners as a second family. I felt taken care of. I felt loved because the staff really worked together for the benefit of the patient. I still look at Shriners not only as my salvation, but as my second home.”

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Paige LaCombe, 19, after recovering from SJS.

Shriners Children’s

Paige has since made a remarkable recovery, saying she has “healed beautifully. But he is still dealing with some lingering effects of TEN. He regularly visits an ophthalmologist to treat eye damage. The teenager uses steroids daily to treat blood vessels and wears a prosthetic device – “basically like glass contact lenses” – to keep her eyes hydrated, doing whatever it takes to reduce her risk of going blind.

Additionally, because of the scarring that has developed, doctors say they don’t know if Paige will be able to have children.

“I’m blessed to be alive,” says Paige, now a Shriners Hospital patient ambassador. “Some days I have bad days with my eyes, but I can’t complain. I am very grateful to be here today.”

“It was a journey. Stevens-Johnson syndrome is terrible and most people don’t survive it,” adds her mother. “Poor, this child is a miracle. She’s been through hell and back. We are not sure about motherhood and we are not sure about her vision. But right now she’s thriving. It’s amazing how she finally turned the corner.”

Paige LaCombe with her family.

Shriners Children’s

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Today, Paige is a sophomore at South Louisiana Community College, where she is pursuing a degree in business management and marketing. A self-described social butterfly, she’s excited to feel a “sense of normalcy” around her peers without seeing the doctor every other day.

Plus, both Paige and Renee want her story to help raise awareness about SJS and TEN, telling PEOPLE that they’ve been able to connect with other families battling the disease.

“My hope is that people will take the time to maybe learn and educate themselves before they take the drug so they don’t end up in this position,” Paige says.

“Educate yourself before you start treating,” Renee stresses. “Ask your doctors questions, educate yourself. Don’t be afraid of the doctor. Learn more about the risks of taking medications. Every day I scold myself for not asking for more. So I did my best to turn this negative event in Paige’s life into something positive.”

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Source: HIS Education