"I Survived SJS/TEN"

March 10, 2010, 1:00PM. By Jane Mundy

Morrisville, PA"I took Bactrim and Motrin for a blood infection for 30 days before the meds caused Stevens Johnson Syndrome or SJS," says Justin. "The day after Thanksgiving I woke up in the middle of the night with a bunch of blisters in my mouth, all over my tongue and my lips—I was choking on the fluid. I tried to sleep it off but when I woke up I had more blisters, a high fever, shivers, vomiting and was very fatigued. I was only 22 years old, I work out all the time, take vitamins and really look after myself—what was happening to me?"

At this point, Justin was in severe pain. His mother rushed him to the hospital where a doctor diagnosed him with SJS—after doing some research online.

"He sent me home, but the symptoms got so bad I was back in hospital that night," says Justin. "The fever got worse, the blisters had spread. Six nurses were looking after me and they had never seen it before, they had just read about it. I was transferred to ICU at the Philadelphia hospital by ambulance because they had a better equipped burn ward.

"The symptoms just kept getting worse. My body started turning black from head to toe [shown at left]. The top layer of my skin sloughed off and the pain was unimaginable. I am extremely lucky I survived—the doctors said it was because I was a healthy kid and because of my age. I was hospitalized for three weeks. Stevens Johnson Syndrome turned into TEN—a much worse form of SJS--I couldn't believe how fast I was getting worse. I had blisters the size of baseballs.

"My parents freaked out. They were worried that I wasn't going to make it. I had a bunch of visitors who didn't even recognize me. The first week I had no idea what I looked like. The first time I saw myself in the mirror, I couldn't believe it—I couldn't even recognize myself.

"When I was initially diagnosed, the doctor asked me what meds I was on, and he said get off those meds immediately and never use them again. Never take anything with sulfa.

"When I got home I didn't know what steps to take. I didn't know whether to call the drug company or call an attorney first. I chose the latter. Even now I am still suffering from SJS/TEN: I am losing my fingernails, I only have three left. And I am losing my hair. I went online to see if these are the after effects of SJS, and sure enough, they are.

"I was reading other people's nightmare stories about SJS and it doesn't seem so rare as the medical websites are saying. I just want to warn the public not to take these drugs or anything with sulfa, please try to find alternatives. I wouldn't want anyone to suffer like I did.

"I got terminated from my job because I was out more than 30 days on medical leave. Luckily I was on good terms with them and rehired at a different position. I was gone for 32 days, so I have to wait another six months to get my benefits. Life goes on…"