GALVESTON, Texas – As a little girl in Lafyette, Paige had seizures for which she took medication and when she began having breakthrough seizures she was put on a new medication.
“Which for me, that was the downfall. Because that’s the medication that soon, very soon caused me to start breaking out in a rash,” Paige said, “My lips were puffy, my cheeks were puffy and then soon it was a quick, escalate in symptoms.”
The best way to explain what was happening to Paige was she was burning from the inside out.
“I had Stevens-Johnson Syndrome, which I had the worst form. Unfortunately, 77% of my body burned from the inside out, which is called TEN, toxic epidermal necrolysis, and thanks to Shriners, they knew exactly what it was and the correct regimen to being treated and that’s the reason why I look the way I do today,” Paige pointed to her arms and face which had skin grafts, although, it is almost impossible to see scarring.
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Stevens-Johnson Syndrome is often a reaction to certain medications or an infection, but the exact cause is not known.
“We found out that the medication that I was on was a black label drug. So, if it’s a black label drug, your doctors are supposed to let you know. ‘Hey, you could have this if you’re allergic to what’s in this medication.’” Paige said.
Her family did not know to be on the lookout for an adverse reaction. She was burning, her skin was blistering off, and she had over a 104-degree fever before she was sent to Shriners Children’s Texas. Then she had more than 20 surgeries.
Today, she experiences some lingering effects from the internal burns, including issues with her vision.
“I wear these prosthetic devices. They’re glass contacts that I have to plunge in and out every day,” Paige said. “Am I worried later on that I’m going to need a cornea transplant? Kind of. But it’s also, you know, that’s for me to worry about later. I’m doing good now, so I’m trying to enjoy it as I go.”
Now, Paige is honored to be an International Patient Ambassador for Shriners Children’s Hospital, a role that will help her travel the country while helping others facing similar battles.
“I feel like this opportunity is going to help me blossom in so many different ways,” Paige said. “They’re like, ‘Paige you’re going to be a whole different person by the end of the year’ and I’m like, I can’t wait. I can’t wait to see what this does for me. I just want to be the person that helps someone on their darkest day be like, oh, there is hope. You know, ‘she went through something so unheard of, so uncommon, and she is doing great,’” Paige said.
