Benefit to raise awareness of deadly reaction to medication
URBANA — A brother is raising awareness about the rare skin condition which claimed his younger sister’s life. 22-year old Angela Anderson died in December from Stevens-Johnson Syndrome. Sunday, her family hosted a benefit in her honor.
It’s something the family never saw coming. They didn’t know what to expect when they went to the hospital, but Tim Anderson says, when they found out what it was and saw what it was doing to his sister, he wanted to spread the word about the condition many have never heard of.
Anderson says he never expected to spend Christmas Eve in the hospital.
“They thought it was measles or mumps or some other infection.”
But, it was Stevens-Johnson Syndrome. The condition killed Anderson’s sister after just four days in the hospital.
“Before that, she was completely healthy and, in four days, it just declined completely.”
SJS starts with flu-like symptoms. Within days, your skin is taken over by a rash; your mouth, eyes and ears, among other things, covered in blisters.
“Your whole body is just blistering and burning.”
“They’re treated much like burn patients because of the body surface area that’s affected.”
Leanna Rhinehart has dealt with several cases of SJS in her time as a nurse. She says Angela had the most serious version of the condition.
“Angie’s presentation was the most severe that I’ve ever heard of in my career as a nurse.”
Rhinehart says people with Asian blood, like Angela, sometimes have a gene called HLAV. People with that gene can have a reaction to certain types of drugs. Anderson’s doctors say it was ibuprofen which led to hers.
“It can happen to any of us, but there are genetic components being researched as linked to SJS and TEN.”
Tim says the money raised from this benefit will go into that research.
“Taking this really negative experience and trying to bring as much positive out of it as possible.”
He named the benefit Live Loud. He says it’s the way his sister lived and wants everyone there to do the same.
“Don’t necessarily be afraid to say how you feel or say what you want to say or be who you want to be because you never know when you’re going to be gone. Live every day like it’s your last.”
Anderson says most of the research for SJS is done in Thailand. He says that’s where the money collected from the benefit will go.
SJS is just one condition stemming from medication use. Nearly 150,000 people in the U.S. die from adverse drug reactions each year, making it the country’s fourth-leading cause of death.