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.
Daughter’s rare adverse drug reaction inspires family’s donation
by Bill Snyder | Wednesday, Dec. 21, 2016, 3:51 PM
Last year Paul and Wanpen Anderson of Champaign, Illinois, were preparing to celebrate the Christmas holidays with their two children when their 22-year-old daughter, Angela, developed a rare adverse drug reaction called SJS/TEN.
“It started with an eye infection on Christmas Eve,” Paul Anderson wrote in an online account of his daughter’s illness. The severe, immune-mediated reaction swept through her body like wildfire, blistering her skin and internal mucous membranes. She died four days later, on Dec. 28, 2015.
In Angela’s memory, the Andersons decided to support research to find a cure for Stevens-Johnson Syndrome/toxic epidermal necrolysis (SJS/TENS). That’s how they found Elizabeth Phillips, M.D., an international expert on adverse drug reactions at Vanderbilt University Medical Center (VUMC).
Thanks to the generous donations of family members, friends and concerned strangers, and with the help of their son, Tim, the Andersons were able to present Phillips with a check on Dec. 13 for $22,000 to support her SJS/TEN research — $1,000 for each of Angela’s 22 years.
A research fund has been set up in Angela’s name at http://vanderbilthealth.com/sjsresearchfund to receive additional donations. “We want to keep this from happening to another person,” Paul Anderson said.
Serious adverse drug reactions (ADRs) are often cited as the fourth-leading cause of death among hospitalized patients after heart disease, stroke and cancer. Treating and helping patients recover from these reactions costs an estimated $136 billion every year.
SJS/TEN is an extreme form of ADR. It often begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters off the top layer of skin. Among elderly people, SJS/TEN has a 50 percent mortality rate.
In most cases, including Angela’s, doctors are unable to confirm with certainty which drug triggered the devastating hypersensitivity reaction, said Phillips, the John A. Oates Professor of Clinical Research at Vanderbilt University School of Medicine.
But careful screening using sophisticated genetic and cellular techniques can help some SJS/TEN survivors avoid another catastrophic event and determine which drugs they can safely take in the future, she said.
Phillips and her colleagues are developing strategies to find true cases of SJS/TEN within VUMC’s BioVU, a unique resource that pairs a de-identified electronic health record with a DNA biobank. These search tools can then be applied to other electronic health records.
Phillips said the research represents an international milestone in the identification of possible genetic risk factors for SJS/TEN.
Complementary studies in her lab aimed at identifying tissue-specific cellular and molecular “signatures” of SJS/TEN will provide further clues to patient risk and could lead to preventive strategies, she added.
Both projects are supported by the National Institutes of Health. Private donations are also important, she said, because they help “raise recognition that this is a potentially solvable problem.”
Paul Anderson, a retired postal worker, and Wanpen, a retired accountant at the University of Illinois, said they spent four months searching the internet and calling research programs around the world before they found Phillips. That kind of persistence, Phillips said, is truly inspiring.
“Serious adverse drug reactions affect diverse groups of patients from all walks of life,” Phillips said. “Yet they are not ‘owned’ by any cohesive medical discipline or patient support group.”
The Andersons’ efforts help give patients a voice, and ultimately will help improve drug safety globally, she said.
Bill Snyder, (615) 322-4747
That young woman you may have seen at a karaoke bar belting out “The Star-Spangled Banner” to an ovation? That was Angela Anderson.
“People said that everywhere she went, people knew her. She was the life of the party. The party didn’t start until she got there, and when she left, the party was over,” said her father, Paul Anderson of Champaign.
“She would wrap herself in the flag and go into the bar and sing the national anthem. College kids don’t do that. And then she would get the whole bar singing with her. She was something else.”
Angela wasn’t always like that, he said. When she was little “she was just so shy.”
“But one day about the time she was in middle school, we were in the car and I was listening to a CD of the Eagles and ‘Heartache Tonight’ comes on, and she starts singing with this raspy, Janis Joplin-like voice, you know?” he said. “I had to stop the car and turn around and find out who was in the car because it was so unlike her.”
“She came out of that shyness and she became very outgoing, very popular. But she wasn’t one of those girls who looked down on others. People who didn’t fit in, she made them feel like they fit in. People who didn’t think they were cool, she made them feel cool.”
When she turned 16, Angela got a job at the Savoy 16 theaters and stayed long enough to become a shift manager.
“When she worked at the theater, people wrote on Facebook after she died that they liked to work when she was the manager because she made it fun for them,” her father said. It was the same at the old White Horse Inn on John Street, another one of Angela’s part-time jobs.
She loved life and her friends and her family.
“Right up until the time they put a breathing tube in, she was sending out tweets and Facebook messages and texting people, trying to encourage her friends to come visit her. I don’t think she knew she was dying,” he said.
* * * * *
On Dec. 24, 2015, Angela Anderson went to convenient care with a fever and small pockets of pus around her eyes. She was told to go home and rest and take a medication for the fever and given ointment to put around her eyes.
The next day, her mother, Wanpen, was preparing a Christmas dinner for 17 guests.
“I had no idea her condition was so bad. I thought Paul would take her to get an IV or something and then he would bring her here,” Wanpen said. “I went to the nursing home to pick up my mom. I figured it would be her last Christmas to be with her family and friends (her mother, Malee Piyapaka, passed away Dec. 14 at age 96). But if I knew how bad Angela was, I would have canceled the dinner and gone to the hospital.”
On Christmas Day, Paul took Angela to Carle Foundation Hospital. She had a high fever, her eyes were swollen shut, the inside of her mouth was black with blisters and it hurt to swallow, she told her dad.
“It wasn’t five minutes and a doctor was looking at her. The next thing, there were five doctors looking at her. It was like an episode of ‘House,'” said her father. “One of the docs said ‘She has the symptoms of Stevens-Johnson Syndrome.’ He said, ‘We may have to send her to Memorial in Springfield or Barnes in St. Louis.’ But the next thing we knew, someone sent her upstairs to ICU, and they were treating her for mumps and measles.”
Her condition worsened, recounted her father. She screamed every time she swallowed, and the skin was peeling off her lips, the palms of her hands and the back of her ears.
Paul Anderson stayed with Angela overnight and was awakened by a doctor the morning of the 26th.
“He said that what you are seeing on the outside of her body is what is happening inside too. She is burning from the inside out. Her lungs were full of fluid. They put a tube down her throat so they could drain the fluid off her lungs,” he said. “Up to that point, I didn’t realize how serious it was. I just completely lost it.
“I told her that I loved her, and she said that she knew that. ‘I love you, too,’ she said. And those were the last words before they put her out.”
Angela never regained consciousness, the weather proved too dicey to fly her to Springfield or St. Louis, and at 8 a.m. Dec. 28, a CT scan revealed she had blood on her brain.
“The doctor said she was brain dead, so we were given the choice of keeping her on life support or terminating it, so at 6:01 p.m., she flatlined,” he said.
Her young, vibrant life ended in a matter of four days.
* * * * *
“We decided before the funeral that instead of flowers, we wanted donations for research. That was an immediate decision,” Paul said.
Although an autopsy and reviews by the Illinois Department of Public Health and the Centers for Disease Control and Prevention found that Angela’s cause of death was inconclusive, Paul said that doctors now believe she succumbed to Stevens-Johnson Syndrome and toxic epidermal necrolysis, two forms of the same rare, life-threatening disorder that causes rashes, skin peeling and sores on the mucous membranes.
It’s often a reaction to a drug or an infection. The Andersons believe Angela’s death was triggered by ibuprophen, the only medication she had taken for her fever.
“We got $10,000 in donations at the visitation and funeral,” Paul said. Angela’s only sibling, Tim, hosted a benefit at the Canopy Club in Urbana. It yielded another $5,000.
But the Andersons struggled finding a place to direct the money.
“We wanted research. We wanted prevention. We want a cure,” Paul said. But they discovered no one was doing research in the United States.
“I found that there had been an international workshop on Stevens-Johnson in Bethesda, Maryland, in 2015 and that 68 people attended,” he said. “I copied down their names. I Googled each one of them to get their email addresses and phone numbers, and I started emailing them.”
Eventually, he heard from Dr. Elizabeth Phillips, an international expert on adverse drug reactions at Vanderbilt University Medical Center in Nashville, Tenn.
“She said they wanted to do research. I asked her to give me a proposal and she invited us to come down and meet with them in May,” he said. “They had a whole team of doctors who talked to us for about two hours. They told us what they wanted to do.
“At that time we had about $16,000. I told them that I realized that in the world of medical research, that’s not a lot of money, but she said that people like you encourage us to do things like this and that it’s a start.”
Phillips gave the Andersons a 12-page proposal for funding the research; the Andersons then undertook GoFundMe campaigns and got the fund up to just shy of $22,000.
“I was $211 short of $22,000, so I wrote a check to get it up to $22,000 because Angela was 22. We had a thousand dollars for every year of her life,” he said.
More donations to the fund at VUMC — http://vanderbilthealth.com/sjsresearchfund — have come in since, he said.
Phillips said that screening using sophisticated genetic and cellular techniques can help some Stevens-Johnson survivors avoid another traumatic medical event and determine which drugs they can safely take.
She said the research represents an international milestone in the identification of possible genetic risk factors for SJS, and that studies in her lab aimed at identifying tissue-specific cellular and molecular “signatures” could provide clues to patient risk and lead to preventive strategies.
There are no Christmas decorations at the normally festive Anderson home in west Champaign this year, although there are remembrances of Angela all over, including her Savoy 16 ID badge at the front door, a SpongeBob SquarePants quilt on the couch and an abstract drawing of Angela, done by a friend, on the living-room wall.
“It’s kind of a blue Christmas for us. We’ll never get over it but we’ll learn to live with it,” Paul said.
“This has really changed our lives,” her mother said. “We’re more positive than we were before, and that’s why we want to help people. We don’t want anyone else to suffer like Angela.”
Tom Kacich is a News-Gazette reporter and columnist. He can be reached at 351-5221 or firstname.lastname@example.org.