Stevens Johnson Syndrome Changing People's Lives

May 15, 2011, 10:30AM. By Heidi Turner

DeKalb, ILMany people do not know that when they take common medications, they could be putting themselves at risk of Stevens Johnson Syndrome. Also known as SJS, Stevens Johnson Syndrome is a potentially fatal disease that often has serious consequences even for patients who survive their Stevens Johnson Syndrome skin disease. Unfortunately, many patients who develop the disease are children and youth, and even after they recover from their ordeal, they have permanent injuries to deal with.

MSNBC (04/20/11) reports the case of Veronica Zenkner, who, at age 13, took two ibuprofen over two days to relieve a headache. Zenkner developed Stevens Johnson Syndrome and suffered from a rash and fever. She went to the hospital where she was diagnosed with toxic epidermal necrolysis—a more serious form of SJS in which the patient suffers blisters on more than 30 percent of his or her body. Zenkner was reportedly put in a medically induced coma.

Luckily, Zenkner survived her ordeal. But now, seven years after her battle with SJS, she is blind in one eye, has permanent scarring and still has a patch on her head where her hair did not grow back.

SJS is an allergic reaction to medication. What makes it so concerning is that it can appear at any time, even after a patient has taken the same medication for years with no signs of side effects. And, although certain medications such as anti-inflammatory drugs are more highly linked to Stevens Johnson Syndrome, just about any drug could cause the allergic reaction. Because SJS is not well known or well documented, patients are often misdiagnosed or continue taking the medication that caused the reaction, not realizing the harm that is being done.

Furthermore, although some medications warn specifically about the risk of SJS, others only warn about the risk of a severe allergic reaction—but do not name SJS or mention specifically how devastating the allergic reaction can be.

And for some patients, it is devastating. SJS can cause blistering of the skin and mucous membranes. In some patients, the skin sloughs off in sheets, leaving the patient vulnerable to infections. Some patients suffer permanent eye damage, including blindness. Others may retain some of their eyesight but become photosensitive, meaning they cannot be out in the light without protection on their eyes.

In some situations, the patient may not be aware that he or she has been put at risk of Stevens Johnson Syndrome until it is too late. In March, a teenager on a flight to California suffered an aneurism. After a first open-heart surgery, doctors discovered the patient would require a second open-heart surgery. Following that second surgery, the teen developed Stevens Johnson Syndrome, suffering blisters all over his skin and putting him into a coma.

According to the Ledger-Enquirer (04/17/11), surgery to save the teen's vision went well, but the results of that surgery are not yet known for certain.