Family Donates to University in Memory of Stevens Johnson Syndrome Victim

January 12, 2017, 7:30PM. By Heidi Turner

Champaign, ILThe family of a young woman who died from Stevens Johnson syndrome has made a $22,000 donation to Vanderbilt University in honor of their lost loved one. Angela Anderson died around Christmas in 2015, only days after seeking medical attention for her SJS symptoms at a hospital. The donation is being used to fund research into SJS.

According to an online account by Angela's father, Paul, Angela died of Stevens Johnson syndrome/Toxic Epidermal Necrolysis that was likely triggered by ibuprofen. Angela's symptoms started with an eye infection that began on Christmas Eve of 2015 and she died on December 28. Paul describes her as having been a healthy 22-year-old girl before she developed SJS.

In a report by The News-Gazette (12/25/16), Angela's family reports that Angela went to a convenient care facility on December 24, 2015, with a fever and pus around her eyes. Health care providers gave her medication to treat the fever and ointment for her eyes. The next day, with a high fever, blisters in her mouth, and eyes swollen shut, Angela went to the hospital. One of the doctors who saw her suggested Stevens-Johnson syndrome, but according to her father Angela was sent to the ICU for treatment of mumps and measles instead of being transported to a different facility.

On December 26 a doctor told Angela's father that Angela was burning from the inside out. She died before the hospital was able to transport her to another medical care facility.

After Angela died, her family began to raise money to find a cure for SJS/TEN but could find no one in the US who was conducting research on the issue. It was only after months of inquiries to doctors that they learned Vanderbilt University Medical Center was willing to begin research. In December 2016, the Anderson family donated $22,000 to Vanderbilt University, to begin research into SJS/TEN.

In a news release regarding the donation, Vanderbilt University notes that serious adverse drug reactions are generally cited as the fourth-leading cause of death among hospitalized patients. Stevens Johnson syndrome and its more severe form, Toxic Epidermal Necrolysis, are extreme adverse drug reactions. Symptoms of SJS often mimic flu symptoms, with patients developing rashes that blister the top layer of skin.

Unfortunately, both SJS and TEN can arise suddenly, even as a reaction to medications that have previously been tolerated with no adverse events. Furthermore, doctors may have difficulty determining which medication ultimately triggered the adverse reaction, making research into the condition difficult. Doctors may also initially misdiagnose the condition and advise the patient to continue taking the medication that caused the reaction in the first place.

Elizabeth Phillips, M.D., an expert on adverse drug reactions, will oversee research regarding SJS/TEN at Vanderbilt University.