Stevens-Johnson Syndrome: The outbreak that never broke out

It is uncertain how the ‘rumour’ started, but it jumped online and kilobytes of information spread through the web – about the latest outbreak of a weird condition called Stevens Johnson Syndrome (SJS). News searches using SJS produced more than 382,000 results. One spoke of a “fresh deadly disease breaking out,” another headline reported “one […]

It is uncertain how the ‘rumour’ started, but it jumped online and kilobytes of information spread through the web – about the latest outbreak of a weird condition called Stevens Johnson Syndrome (SJS).
News searches using SJS produced more than 382,000 results. One spoke of a “fresh deadly disease breaking out,” another headline reported “one feared dead as strange killer disease hits Nigeria.”
A press conference by Nigeria’s health minister, Isaac Adewole, about SJS fuelled the bytes of frenzy. He announced one person was dead from SJS.
Reports said another was hospitalised and recovering. Online platforms began to churn out “all you should know about Stevens Johnson” pieces.
The frenzy over SJS mounted, at least on the internet, when Toronto-based Fadesola Adedayo told the press conference his plan to run a 717km marathon in 17 days to raise money for research into SJS, to which his brother Adeyosola succumbed.
After medical school at University of Birmingham, Adeyosola was heading a medical team offering free medical care to people living with HIV/AIDS in Ijora-Badia, Lagos when he had a needle injury while managing a patient.
The 27-year-old developed “uncommon reactions” during treatment to prevent HIV and died two weeks later. It was in 2012, four years before reports that Nigeria was “on high alert” over SJS.
So what is SJS? The name comes from two men Albert Stevens and Frank Johnson who first described the condition in 1922. Since then it hasn’t made a blip on the radar of public-health concern in Nigeria before this May.
“And it is not even an infectious disease,” one pathologist told Daily Trust. Many don’t even consider it a disease in its own right.
SJS is an “immunological reaction,” said Dr. Henry Ewunonu, of the National Hospital Abuja. “That’s medical speak for a reaction induced in your immune system by something you have taken. It could be anything but most of the time, Stevens-Johnson is due to drugs,” said Ewunonu.
Little is known about it outside of doctors’ literature but it is a disorder that has to do with hypersensitivity to certain drugs. Figures from Nigeria are uncertain, but SJS incidence in Europe is put at around three cases per million a year.
Worldwide figures suggest up to seven people could be affected in one million. It is known to be more common in people with HIV, probably because the virus already compromises the body’s immune system, and more common in females than males.
People aged 10 to 30 have been among those afflicted, as have babies as young as three months.
The science behind SJS is straightforward. “For some immunological reasons some people develop blistering eruptions on their skin on exposure to certain drugs and infections,” said Dr. Perpetua Ibekwe, a physician at the National Hospital Abuja.
Infections triggering SJS could be from viruses (like, hepatitis and influenza), bacteria (diphtheria and typhoid), fungi (may be ringworm) and protozoa (malaria).
Infections are thought to account for only one in four SJS cases; the rest of it is attributed to drugs.
Certain drugs used in treatment of HIV and epilepsy may also trigger SJS. Some sulfa antibiotics to treat infections can as well have the same reaction.
SJS symptoms are a mix that ranges from upper respiratory tract infections, with fever, sore throat and chills to headache, vomiting, diarrhoea and malaise.
An examination might find fever, altered level of consciousness, seizures and coma.
Patients may develop painful red eyes as the covering of the eye inflames and oozes pus; they may also become extremely sensitive to light.
Unsightly lesions can also appear on any body part.
“We actually call this ‘adverse drug reaction,’” confirmed Adewole amidst efforts to assure the country SJS isn’t contagious. He’s zeroed in on self-medication predisposing people to unknown reactions to drugs
“First thing is to let people know adverse drug reactions do occur. The next is to let Nigerians be aware it is dangerous to take unprescribed medication, and when it occurs we must report early,” he said.
“We want to be part of the reporting system globally in a way to build database so that we can get more information about these drugs,” Adewole added.
Point is drugs, even when taken as prescribed, do cause reactions. Pharmacovigilance tracks and documents each reported reaction. A global system started in 1967, and Nigeria joined up in 2004.
“Our obligation is to contribute data to let people know potential hazards that do occur when we take drugs in the normal doses,” he said.
The worry is “the lack of information,” said Ibekwe. “Most people don’t know about it. Not much attention has been put into it to be able to generate research in the field to know, for instance, how people are predisposed to it and the best way to manage it.”
The scanty research and knowledge of SJS is the reason Adedayo is running 717.4km in 17 days to raise awareness and $1million to fund research. That’s one marathon – some 42.2km – every day.
Running helped him deal with depression after his brother’s death, and the streets of Ontario were his training tracks. He actively began pounding the streets nearly 14 months after his brother’s death – a death to a rare skin disorder he considers an injustice four years on.
“It doesn’t matter when it actually happened. An injustice anywhere is an injustice everywhere,” Adedayo told journalists at the Abuja briefing before his marathon started. “The fact that I have spent four years to get to this time is testament to my dedication to the cause.”
The health ministry has backed his marathon, which went past Lokoja this week, to “build a philosophy spirit in Nigeria,” according to Adewole. It is also building up a body of knowledge from an epidemic that never was.