However, "no amount of training could prepare me for the pain ahead," she said.
Susie's SJS was a reaction to the anticonvulsant drug lamotrogine. It started with a headache. Susie thought she had the flu and that it would pass and went to bed.
When she awoke her mouth was ulcerated and her eyes had become swollen, blotchy and painful. Within 24 hours her lips had sloughed off and she began to spit rotting flesh and blood from her mouth. Her genitals were swollen and sore and it was agonizing to urinate.
As the SJS progressed, Susie appeared as badly on the outside as she felt on the inside. "I no longer looked like a human being," she said, "it was terrible for my family to watch me suffer and awful for me to know that the staff who cared so well for me were also physically shocked and repulsed when they saw me."
"I felt utterly beaten by this awful disease," Susie recalls. "Each time I closed my eyes the eyelids stuck together and had to be painstakingly bathed apart by the nurses," she said. Her eyes hurt so badly and her vision became so poor that Susie remembers fearing for her eye sight more than death.
Even after the acute SJS phase is over, its after effects can last a lifetime. For instance, the nailbeds on Susie's hands are permanently damaged.
She continues to get corneal abrasions due to in-growing eyelashes and her eyes are still very bothered by bright light. Susie's tear ducts have been permanently damaged and she says, "using artificial tears has become as routine as breathing."
Overall Susie remains optimistic. "By some miracle considering the severity of my illness," she notes, "I can see and if I wear sunglasses can manage to do most things without too much pain."
"My face looks unfamiliar due to the scarring of my eyelids," Susie said, "but does not look as disfigured as I envisaged it might." There is scarring on her genitals and initially it was difficult to have sex but with patience this problem is now better, she says.
"At the start of this terrible disease it feels as if there is no hope," Susie recalls. But she wants other people with SJS to know that there is hope and that with time, patience, and determination, they too "can overcome this terrible illness and its consequences."
Adverse reactions to prescription and over-the-counter drugs are one of the leading causes of death in the United States. Yet, because there is no mandatory reporting system for post marketing adverse affects, less than one percent of events are ever reported to the FDA.
For this reason, no one can provide an accurate number of the cases of Stevens Johnson Syndrome in the US. Described in many drug package inserts as a "serious skin condition," SJS is in most cases a devastating allergic reaction to a drug and has been described as "a fate worse than death."
According to experts, SJS causes the immune system to turn on itself to rid itself of the offending drug, in effect burning the patient from the inside out. SJS often causes blindness and results in death in 10 to 30% of the cases.
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