"I Wouldn't Wish SJS on My Worst Enemy"

Dover, DE"I had a urine infection earlier this year and my doctor prescribed Bactrim," says Grace. "I started to get headaches and a fever but I thought it was the flu. Never in a million years did I think it could be Stevens Johnson Syndrome; I'd never even heard of SJS until the hospital doctors told me. I was even more shocked to discover this life-threatening disease was caused by an antibiotic and that some victims can develop SJS simply from taking Ibuprofen or Children's Motrin!"

Grace says her fever didn't go down, so she went to the ER, where she was given Tylenol and sent home. SJS has also been associated with Tylenol.

"I just got sicker and started to vomit," says Grace. "This time my friend took me to another hospital and I was admitted right away. My white blood cell count was so low they thought I had AIDS (the test came back negative). And my temperature had risen to 104° F. I also had a CAT Scan, urine and blood tests and x-rays; they had me on oxygen and IV. They got a second opinion from a specialist who told me that I had Stevens Johnson Syndrome. After three days in hospital I broke out in huge blisters all over my body, from my face to the bottom of my feet. And I couldn't eat anything because my throat was so swollen and blistered.

"I was so drugged up on medication I had no idea how serious my illness was. I was transferred to the burn unit at Crozer Hospital because the Delaware hospital was too small and not equipped to deal with SJS patients. They also put a tube down my nostrils and into my stomach to feed me.

"I do remember screaming with pain. I was calling on God, that's how painful it was. At one time I even wanted to give up, I felt like my body was on fire. I was at Crozer for 10 days, and during that time my skin peeled off. I'm a black woman but my skin turned pink; it was raw. This isn't something I'd wish on my worst enemy.

"I'd never heard of this disease before. The doctors told me it was rare and I was the first SJS victim in Delaware. They also said I could have died if I didn't make it to Clozure that night. I asked the doctors how I could have gotten SJS and they told me that I got it from an antibiotic—it must have been the sulfa drug Bactrim."

(Bactrim (sulfamethoxazole and trimethoprim) is an antibiotic used to treat ear infections, urinary tract and other infections. It is also associated with Stevens-Johnson Syndrome—a potentially deadly skin disease that usually results from a drug reaction.)

"When I felt a bit better and the tube was taken out, my food tasted weird. I didn't have any taste buds—they had been burnt off. To this day I still can't enjoy food like I used to, but my taste buds are coming back slowly.

"When I was finally discharged from hospital I researched SJS online. It was shocking.
Some of the pictures I saw of SJS victims were horrendous. I guess I was way messed up too. Because I am diabetic, SJS also screwed up my sugar levels. They said SJS would be fatal if I got it again. Since I've gone through this I am scared of taking anything, even an aspirin. I have to take diabetes meds, but from now on, I will only take medication if it means life or death."