A teen is opening up about a devastating childhood illness and rare disease that left her wrapped like a mummy and experiencing extreme symptoms. Louisiana native Paige LaCombe said she had a normal childhood up until she turned 8 years old.
You see, LaCombe suffered from epilepsy and started taking a new medication for her breakthrough seizures. Unfortunately, she developed an allergic reaction to the medication. The reaction gave her a rare skin condition that left her in the hospital.
In 2013, she said she woke up with a strange tingling in her skin.
"She kept saying that she felt like she had bugs crawling on her," her mother, Renee LaCombe, told People. "We flipped on the lights and that's when we realized. She had puffy lips, her eyes were completely red, her face was swollen, and she was developing what looked like a rash. Plus, she was having a really high fever."
"We saw her and immediately rushed her to the hospital. And that's when things just went completely south," she said.
Initially, doctors misdiagnosed her rare disease as pink eye and strep throat. But things didn't get etter.
"It was silent from the doctors. That's when I kind of knew, oh, this is not good," Paige, now 19, told PEOPLE. "I vividly remember thinking, 'Am I going to die?' Because at this point I could see my skin starting to blister. It was so scary."
Living With Rare Disease
"It progressed while she was in the ER really quickly where anybody would touch her, her skin would just literally fall off," Renee explained. "Paige was burning from the inside out. It was something that was not physically seen so by the time her skin started sloughing, she was already having all those feelings on the inside."
It turned out that the 8-year-old had Stevens-Johnson syndrome, a rare disease. The disease causes severe rashes and blisters, erosion of the skin, burning eyes, mouth, and throat, and fever. Paige had the most severe form of the disease. Around 80% of her skin was affected.
As doctors struggled to provide 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 Paige might be suffering from a skin disease called Stevens-Johnson syndrome. She recommended the family visit Shriners Children's Hospital Galveston in Texas.
Her parents moved her to Shriner's Hospital. "I was a hot mess. I truly was," Renee said. "The first thing that the physicians told us was, 'This is not good, but we're going to try our best to do everything that we can.'"
Reflecting back, Paige said she doesn't remember much about the experience. She ended up having 20 surgeries over the course of seven years. That included 11 surgeries on her eyes for grafts.
"I finally woke up after, I'm not even sure what number surgery, but I opened my eyes in a whole new environment," she continued. "I saw my parents, saw the doctors, and looked down and saw myself gauzed up like a mummy. That was frightening but I thought, hey, I'm still alive."
She is now an ambassador for the hospital.
"I'm blessed to be alive," says Paige, now a patient ambassador for Shriners Hospital. "Some days I have bad days with my eyes, but I can't complain. I'm very thankful to be here today."
