Stevens Johnson Syndrome Difficult to Diagnose

June 5, 2013, 8:00AM. By Heidi Turner

Rockbridge, VAOne of the main roadblocks that patients who develop Stevens Johnson Syndrome (SJS) face is that their condition is often misdiagnosed. Unfortunately, that misdiagnosis means that it takes longer for patients to get the medical treatment they desperately need. It also means they could be treated for their misdiagnosed condition with the same medication that caused their Stevens Johnson Syndrome symptoms in the first place, putting them at further risk of injury. Two recent examples of SJS highlight what patients might experience during their ordeal.

One patient is seven-year-old Princess Gillespie, who developed Stevens Johnson Syndrome after taking ibuprofen. According to a report at WSET (5/1/13), the young girl survived, but was in a medically induced coma during her ordeal. Doctors say she has a long road before she recovers. A doctor interviewed for the report noted that the allergic reaction can come on with no warning, even in a medication that the patient has previously used successfully.

Stevens Johnson Syndrome is a potentially fatal allergic reaction to medication. It often starts out as a fever - making the situation complicated because some medications that are linked to Stevens Johnson Syndrome are also used to treat fevers - and progresses to blisters over the body. When it covers more than 30 percent of the patient’s body, Stevens Johnson Syndrome is then called Toxic Epidermal Necrolysis.

Meanwhile, a woman who survived her ordeal still faces chronic pain, sensitivity to heat and cold and extreme fatigue. The woman, Sonia Whyte-Croasdaile, was prescribed eye drops for pink eye, but quickly developed a fever, throat sores and lesions on her skin. Ultimately, even her internal organs suffered burns. According to Mississauga.com (5/18/13), the patient’s skin peeled from her body, making her unrecognizable.

Because doctors were unfamiliar with Stevens Johnson Syndrome, they did not initially know how to treat Whyte-Croasdaile, until a tissue sample confirmed SJS/TEN. Once the diagnosis was confirmed, treatment began. After six weeks, she was able to go home.

There are many factors that make Stevens Johnson Syndrome complicated. One is that it can arise from daily over-the-counter medications, and can come about at any time. Another is that doctors are often unfamiliar with it, and may misdiagnose it, delaying the patient obtaining vital treatment. Third is that many medications have been criticized for not carrying adequate warnings about the risk of SJS or TNE, so patients - or their parents - are likely not aware of what symptoms to watch out for.