Although SJS continues to be listed as a rare condition and is virtually unheard of by most people, it is becoming much more common. The February 15, 2005 Pittsburgh Post-Gazette, reported that there are between 600-2,000 cases in the US each year.
With more than 40 percent of Americans taking at least one prescription drug (2004 CDC report), the potential for the deadly adverse drug reaction is increasing, according to a SJS Foundation warning in the December 13, 2004 Business Wire.
The Stevens Johnson Foundation was founded as a resource for SJS victims and their families. Its mission is to provide support services, and compile and distribute information about SJS to the public and medical professionals. It also works to promote awareness of the symptoms of SJS so that a quick diagnosis can be made.
"During the winter months," Jean reports, "we learn of 15 new cases a week, and that's only people with Internet access."
Experts agree that recognition of early symptoms followed by prompt medical attention is crucial in minimizing the long-term effects of SJS. Symptoms include:
" Rash, blisters, or red splotches on skin
" Persistent fever
" Blisters in mouth, eyes, ears, nose, genital area
" Swelling of eyelids, red eyes
" Conjunctivitis
" Flu-like symptoms
" Recent history of having taken a prescription or over-the-counter medication
Dr Bernard Cohen, MD, of John Hopkins Hospital, is a pediatric dermatologist and advisor to the SJS Foundation, and says, "typically, the reaction begins within the first two weeks of taking the drug."
Experts usually distinguish between three forms of the disease Dr Cohen explains, "a milder form called Erythema Multiforme Minor, or EM, Stevens Johnson Syndrome, SJS, and TENS, or Toxic Epidermal Necrolysis Syndrome, the most severe form."
"With EM, which can be recurrent, there will be lesions on the distal extremities [lower legs and arms] and in the mouth; there is little mucous membrane involvement, however.
"With SJS, which is usually not recurrent, there are usually blistering ulcerations of the cornea, mouth, rectum, genitalia, skin, and urethra, usually accompanied by a high fever and generalized weakness.
"TENS involves the entire skin and mucous membrane; the skin literally sloughs off of the person's body."
Dr Cohen advises. "Care must be taken to prevent staph infections of the skin from taking hold," he said. "Intravenous fluids to prevent dehydration are a must, as the person is usually unable to eat or drink due to the mouth blisters," he notes.
Some of the lasting complications of SJS that have been reported include blindness, dry-eye syndrome, arthritis, lung damage, asthma, photophobia, chronic obstructive pulmonary disease, loss of nail beds, scarring of the esophagus and other mucous membranes, and chronic fatigue syndrome.
As a physician, Susie Orme says she tells anyone who will listen about SJS. "If I prevent one of my colleagues from writing an unnecessary script and prevent one case of SJS it will have been worthwhile," she notes.
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