One Woman's Stevens Johnson Syndrome Hell

January 5, 2011, 1:30PM. By Gordon Gibb

Osh Kosh, WIShe doesn't say what medication thrust her into the throes of Stevens Johnson Syndrome. Nor do we know her name beyond her blog handle of "sjssrvvr" (for SJS survivor). However the self-described wife, mother, runner and hair stylist from Wisconsin is adamant about getting the word out about SJS. In 2011 she starts the New Year training for a triathlon. She has an Iron Man in her sights.

And yet barely three years ago this attractive young woman who was pictured with her husband enjoying a country music festival in 2008 had no idea that three days after that picture was taken her life would take a dramatic turn, landing her in hospital for three months.

"It all started for me after I was on a medication for 16 days," sjssrvvr writes. "I was taking it because I had been fighting depression and my doctor thought this would help. My husband and I were at a local Country Music Festival camping with our friends and having the time of our lives."

But then the young woman started to find a red Stevens Johnson Syndrome rash on different parts of her body. "I went to see a doctor who thought Benadryl and rest would help. That the reaction would just take time to work its way through. Within 24 hours, I was admitted to the hospital with blisters over most of my body."

That began a hellish journey for the young mother. Those blisters would spread to over 95 percent of her body. She was intubated and moved to the burn unit, where most people suffering from Stephens Johnson Syndrome symptoms wind up. The woman could not eat or drink, and had to be fed by a tube. The lining in her lungs, esophagus and mouth began to shed, she writes. Fluid buildup in her lungs threatened the development of pneumonia, which came to pass.

"After that spell, my kidneys began shutting down and I gained 65 [pounds] of water weight. The medication they were trying to use to take the weight off wasn't working, so they hooked me up to dialysis to pull the water off a drop at a time."

The writer apologizes to her blog readers for the graphic pictures accompanying her story. But with Stevens Johnson Syndrome skin disease, she writes, that was her reality.

"I went into the hospital in the early morning hours of June 29, 2008, and came home in the late afternoon of September 16, 2008." During that time she had only seen her children once. "The pig skin they used to stimulate my skin growth worked and I can say that now I have a full body of skin!!!! The weight eventually all came off, and then some, but I was going to live through this!!"

And she has lived through SJS rash. Sjssrvvr is back running and training with her team for that triathlon in six months—all to raise awareness for the devastation of SJS. But she was not left without permanent scars. Her encounter with SJS robbed her of most of her vision from her left eye, for which she requires a patch to protect the now-light-sensitive organ. Her right eye can no longer produce tears on its own, so she wears a special lens to keep the eye hydrated.

"I have had two surgeries since coming home and there may be more down the line. But that is not unusual for those of us who have survived this rare disease. A disease that can happen to anyone at anytime." Even while SJS is rare, its potential and reality for some have prompted calls to Stevens Johnson Syndrome lawyers, to fight for compensation from the manufacturers of medication known to trigger the disease.