Stevens Johnson Syndrome "Horribly Painful"

February 26, 2011, 8:00AM. By Heidi Turner

Tabernacle, NJGina K. was about to start a new school when she first experienced the symptoms of Stevens Johnson Syndrome. By the end of her ordeal, the SJS had affected her eyesight and resulted in skin sloughing off parts of her body. She was treated in an Intensive Care Unit and still has markings on her body from the Stevens Johnson Syndrome rash.

"Two weeks before I was about to transfer to a new school, I was prescribed medication for what was assumed to be bronchitis," Gina says. "I was prescribed Bactrim with no warnings given about the medication. I was told to take Bactrim for two weeks and I'd be fine.

"A week after I started, I vomited blood. I went to the ER and was told it was a stomach infection. I was sent home and put on stomach pills and kept on the Bactrim.

"Then I started school. I broke out in a rash while I was sitting in class. I left the class and called the doctor and said I thought it was allergic reaction. The doctor told me to take Benadryl.

"The next day the rash was worse. I went online and researched it and came across SJS. The symptoms sounded like what I was going through; I had a gut feeling that's what it was but it seemed rare. I wondered why I would have it.

"I went back to the ER and the rash was now ten times worse. I brought up SJS and the ER doctor told me I was a hypochondriac and I didn't have SJS. He told me it was a basic allergy and I should stay on the Benadryl.

"I went home and went to bed. When I woke up the next morning, I couldn't breathe, I couldn't walk and I couldn't open my eyes. My skin was purple—I looked like someone had dumped acid on me. I made my way downstairs and my dad saw me and took me to the hospital.

"At the hospital, I saw my regular doctor, who said it looked like SJS. I went to a ENT specialist, who confirmed SJS. The dermatologist also said it looked like I had SJS.

"I went back to the ER and saw the same doctor as before. This time, he said, 'Now it looks like you have SJS.'

"I was treated by a burn specialist in the Intensive Care Unit. Everyone had to be in plastic outfits to see me. They had to get the antibiotic out of me but I'd finished the two weeks so it was fully in my system. There were needles in both arms, I was hooked up to IVs and I didn't know what was going on.

"They were on the verge of flying me to a burn center because it was so bad. They kept me overnight so they could monitor my breathing because my esophagus was burning and I kept choking. Thankfully, they didn't end up sending me to the burn center.

"It was scary. My skin sloughed off my arms, legs, stomach, back and face. It's all new skin. The disease literally burns your body from inside out. My stomach was burning and I didn't know—that's why I vomited blood.

"It was horribly painful. When I went home I couldn't return to school. My baths and showers took two hours and I just cried and bled every night for a month. When I went back to school it was still warm out, so I got up early every morning, wrapped my body in gauze and put on a sweatshirt and hood so people couldn't see me.

"That was in September 2009. I still have discoloration and markings on my stomach and my back. I've seen footage of people who had it worse but when people see my markings, they ask about it. It's noticeable.

"I never thought this could happen to me. This happens to one in 50,000 people. The doctors confirmed I had SJS and it was because of the Bactrim; it was a sulfa allergy. I have to carry a warning with me because now that I've had it in my system, the next time I'm exposed to sulfa, I'll die. They said I could have died if I hadn't come in again.

"I've always worn glasses but never had horrible eyesight. My eyesight has dropped significantly and I have very dry eyes. Even when the doctors checked my eyes, I saw what looked like little cuts in my eyelids.

"I always warn people to trust their body and instincts. Always double-check what the doctor says. Don't stick to one diagnosis. Do your research; that's what saved me. Stay on top of things and trust your instincts."