Approximately every third caller to the SJS Foundation has been prescribed the drug Bactrin, and the rate of calls is increasing. "We now get about fifteen new calls a week [from people who have taken this drug]," says McCawley.
The SJS foundation was founded with a small core support group in 1996. "Today, our mailing list comprises over 1,500 people and in five years we have had over 600,000 hits," says McCawley. That is a lot of people concerned with SJS.
"We do not believe SJS is rare, as we have been told. What we do believe is rare is that not many people are reporting it to the FDA. People don't realize that they can report side effects from drugs; they think physicians are doing it but when my daughter's case was reported in 2004 (see below) only 10 SJS cases were recorded with the FDA for that entire year. I personally spoke with 50 people that year that had contracted SJS or knew a loved one who had," she says.
"A lot of children are on Bactrin; it seems like it is the first thing doctors try on them," says McCawley. She doesn't want to see another drug on the market like the one her daughter took when she was just 11 months old.
"My daughter had SJS from taking Phenobarbital for her epileptic seizures. We were told the side effect of this drug was drowsiness. You can imagine my surprise when she was diagnosed with SJS and spent 26 days in the burn unit. Her skin was sloughing off 80 percent of her body. Her entire face was unrecognizable: she looked like she had been deep-fried. She was on a morphine drip. When she was conscious she would cry all the time."
When her daughter was 18 months old, McCawley looked for people who had SJS. Doctors told her it was very rare and she would never meet anyone with it.
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Coincidence? Hardly. It just shows how many people have, or had, SJS.
McCawley's daughter is now 12 years old and blind in one eye. In her other eye she is visually impaired and light sensitive. "It has been very hard on her," says McCawley. "She will never be able to drive, her vision fluctuates so much. Even on a good day, the light from the back of a car's windshield would be blinding. We live in Colorado and when it snows, the sun comes out and she can't go outside—in fact she doesn't go out very much at all.
Bactrin doesn't list painful blistering and ulcerations, shortness of breath and more as possible side effects.