Stevens Johnson Syndrome: Mandatory Recognition Needed

July 9, 2010, 3:30PM. By Jane Mundy

Machesney Park, ILA few years ago, Kristin took an antibiotic for a sinus infection. She wound up in hospital, diagnosed with Stevens Johnson Syndrome (SJS). Fortunately, the ER doctors recognized and treated her SJS before it led to toxic epidermal necrolysis (TEN).

Kristin developed a lot of mucus in her mouth and a high fever, followed by red skin and an unbearable itch all over. "I went back to my doctor and he put me on steroids and prednisone," says Kristin.

But he didn't take her off Bactrim, so she got worse. "It got to the point where I couldn't eat or drink because of the blisters down my throat," Kristin says. "I was admitted to hospital and right away they asked what meds I was on—they figured I was having an allergic reaction to Bactrim—then a doctor told me I had SJS.

"I was so dehydrated. They put me on an IV and if I didn't start eating, they would have put me on a feeding tube. It hurt but I was able to keep light food down. Even water hurt. Then I got blisters on my arms. If I had any more blisters they were going to transfer me to the burn unit. I was in so much pain and my skin was so dry it was cracking. My three-year-old daughter was freaking out. Once I got home she wouldn't let me out of her sight—she thought I was going back to the hospital.

"To this day I still have scars on my tongue and on my arms. I can really see scars when I get out of the shower. I see my doctor every six months and I'm still on medication to prevent it. I also have to get blood tests every six months for auto-immune deficiency that can be brought on by SJS. I have tested positive for lupus so my doctor is keeping a close eye on me. And I have to see an allergist every six months.

"My skin still bothers me—it has never felt normal. I was only in hospital for seven days but it took weeks to heal. I was able to see my kids but I couldn't take care of them; I needed help all the time. On top of everything, I can't even take ibuprofen. I get migraines but can't take my usual meds, and I am terrified to take anything new.

"As bad as it was, I recovered. I think it was because that doctor recognized SJS right away and put me on the right drugs."

The Stevens Johnson Syndrome Foundation officials estimate that there are 100,000 SJS deaths each year in the US, but that may just be the tip of the iceberg since there are no mandatory reporting rules for adverse drug reactions. Yet SJS is still referred to as a rare skin condition.

Even today, many doctors nationwide don't recognize SJS. Famed basketball star Manute Bol succumbed to SJS just last month after returning from a trip to his native Sudan. It is unlikely that anyone knew how to help him at the Nairobi hospital where he was briefly treated.

LawyersandSettlements has interviewed a number of SJS survivors who reported that their doctors had never seen or even heard of SJS. If every health care provider worldwide took a crash course regarding SJS—what symptoms to look for, how to treat it—it is likely that a number of lives could have been saved.