For Patients with Stevens Johnson Syndrome, Recovery Is Not Certain

June 20, 2011, 6:00PM. By Heidi Turner

Denver, COFor patients who develop Stevens Johnson Syndrome, recovery is not always certain. Even those who recover from their Stevens Johnson syndrome symptoms may face a lifetime of health problems, including blindness and sensitivity to the sun. And there are those who do not recover from Stevens Johnson Syndrome—sometimes called SJS—who die after developing an allergic reaction to a medication.

Three stories about Stevens Johnson Syndrome that have been in the news recently highlight how varied recovery to SJS can be. One such story is that of Emilie Nickoloff, who was diagnosed with Stevens Johnson Syndrome four years ago. According to ABC 7 NEWS (06/16/11), Nickoloff had a fever of 104 and a rash on her arms and torso. Nickoloff lost her sight, but an amniotic membrane transplant saved her vision. She had burns all over her body and wound up in a coma.

To this day, Nickoloff does not know what medication caused her severe reaction. Now, four years later, Nickoloff has made a full recovery and is competing in an Ironman triathlon to raise awareness about SJS.

Meanwhile, the story of Brianna Maya, who was three years old when she developed Stevens Johnson Syndrome, shows that some people can live through their ordeal but still suffer lifelong injury. Maya, who is now 13 years old, was recently awarded $10 million in her lawsuit against Johnson & Johnson's McNeil Consumer Products division after alleging that use of Children's Motrin caused her health problems.

Maya suffered a rash, eye infections and lung damage after taking the Children's Motrin. Now, more than 10 years later, she is still blind in one eye, and has recurring eye infections, lung damage, brain damage, permanent scarring and recurring seizures. According to Dallas Business Journal (05/25/11), the jury deliberated for 10 hours before determining that the defendant was responsible for the harm Maya suffered and awarding the $10 million.

Not everyone survives their Stevens Johnson Syndrome ordeal; and not everyone even knows they have been given a medicine that could harm them. The Altoona Mirror (06/06/11) shares the story of Matt Noel, who died in 1993 from sepsis and respiratory failure related to an allergic reaction to sulfa. Noel was given the sulfa medication after a liver transplant. After developing an allergic reaction to Bactrim, the initial sulfa drug, Noel was then given a second sulfa drug. He died a week after being admitted to the hospital.