Stevens Johnson Syndrome: A Frightening Condition That Could Occur Anytime

Portland, ORUnless you or someone you love has experienced the horror of Stevens Johnson Syndrome, it is probably a condition you know very little about. But for families who have suffered the horror of Stevens Johnson Syndrome (SJS), the nightmare is all too real. Unfortunately, for as many people in the public who know little about SJS, there are also doctors who fail to recognize Stevens Johnson syndrome symptoms immediately, putting patients at risk of life-threatening complications.

Stevens Johnson Syndrome is an allergic reaction to a medication. The patient who develops SJS experiences blistering on her skin and the mucous membranes. Her skin eventually sloughs off and she may lose her eyelashes. Eventually, she may lose her sight or at the very least suffer from extreme light sensitivity.

Not many people know about SJS or understand it. Complicating matters is that doctors also may not recognize the condition. The patient who develops SJS was already taking a medication for another condition. For example, a child may have been given Children's Motrin for a fever prior to developing the reaction. The first signs of SJS are fever, sore throat and headaches, which can easily be mistaken for other conditions.

The patient who develops the SJS may even be treated with a higher dose of the same medication that caused the allergic reaction or a high dose of a similar medication. And, because SJS can occur in patients who previously showed no ill effects from the drug, many people do not consider they are having an allergic reaction to the medication.

By the time a diagnosis is made, the situation is much worse. Patients who develop SJS could eventually develop Toxic Epidermal Necrolysis (TEN), in which patients lose more than 30 percent of their skin. They are treated in the burn unit of hospitals because their skin lesions closely resemble those of burn victims. Many patients cannot even be fed through a feeding tube because their throat and mouth develop painful lesions.

Although it is not known exactly what causes SJS, some medications are more associated with the disease than others. These include Dilantin and ibuprofen (including ibuprofen used in children's medications).

Patients who are lucky enough to survive their SJS/TEN ordeal often have lifelong health problems, including vision problems, permanent scarring and light sensitivity. Not everyone who develops SJS or TEN survives.