Jo Daniels, in February 2018, experienced routine cold symptoms and took Benylin cough medication, a product she had frequently used before without incident. This seemingly innocuous act, however, triggered a rare and devastating reaction that would fundamentally alter her life, inflicting lasting damage to her vision, appearance, and ability to work.

Within just two days of ingesting the medication, Jo developed agonizing sores and blisters inside her mouth, where layers of skin began to peel away. Distressing ulcers also formed around her eyes, creating the horrific impression that she was “weeping blood.” At its worst, this terrifying experience led her to believe she was going to die, recalling the imagery of the Virgin Mary with blood from her eyes as she wiped blood from her own with tissues.

Jo was subsequently diagnosed with Stevens-Johnson syndrome (SJS), a rare but extremely serious skin reaction that affects only one to two people per million annually. Doctors later identified paracetamol, an ingredient in the Benylin, as the specific trigger for this severe allergic response. While many drugs can cause SJS, the most common culprits include penicillin, anti-seizure medications such as lamotrigine, carbamazepine, and phenytoin, certain sulphonamide antibiotics like sulfamethoxazole and sulfadiazine, and non-steroidal anti-inflammatory drugs like ibuprofen. Very occasionally, a virus is suspected when a drug cause cannot be identified.

Dr. Daniel Creamer, a consultant dermatologist at King’s College Hospital, explains that SJS is almost always an allergic reaction to medication. It is known as a febrile mucocutaneous drug reaction, meaning it impacts the body’s mucous membranes – the moist linings found in internal passages covering digestive, respiratory, and genital organs, as well as sensory organs like the eyes. The initial signs often include a fever, sore mouth, and gritty eyes, which are commonly misdiagnosed as a virus by GPs or A&E doctors. Subsequently, blisters appear on the skin and can extend into the airways, blistering the windpipe and potentially causing respiratory failure. Approximately ten percent of SJS patients die, frequently due to life-threatening sepsis resulting from infections that infiltrate the bloodstream as the compromised skin deteriorates and sloughs off.

Jo recounted waking with sores in her mouth, swollen eyes, and cloudy vision the morning after taking the cough medicine, a profound shock for someone who had always been robust and rarely fell ill. Her GP initially attributed her mouth sores and fever to measles, advising rest and fluids. However, Jo’s symptoms rapidly escalated over the next five days; her mouth sores became so excruciating she couldn’t eat or swallow, and the affliction spread to inside and around her ears. Recognizing the unprecedented horror of her condition, her mother took her to A&E in Swansea. Fortunately, one of the doctors recognized it as SJS, swiftly admitting her to the burns unit. There, she received intravenous antivirals, antihistamines, and antibiotics, along with medication to prevent scarring on the retina and steroids to reduce inflammation and suppress her overactive immune response. She narrowly escaped the critical point where organs can shut down.

The recovery process was arduous, taking three weeks for Jo’s ulcers to begin healing. During this time, her vision impairment rendered her unable to function. She described feeling as though she had severe burns across her entire mouth, nose, and eyes. Eating proved impossible, even soup and jelly were too painful, and she could only manage small sips of water, leading to a loss of about half a stone. The steroids caused her skin to dry and flake severely, with large chunks detaching from her lips and mouth. Horrifically, she discovered a large piece of what she realized was the inside of her cheek had fallen off. The fear of choking on her own flesh while sleeping was so intense that her mother had to monitor her during her few hours of rest each night. Dr. Creamer confirmed that SJS-induced blistering can cause sections of skin to die and fall off in this manner. He added that the condition can also cause scarring and permanent damage to the delicate membranes of the eye, leading to sight problems, and interfere with saliva production in the mouth, which can result in dental decay.

Eight years later, Jo endures profound and permanent effects. Her eyes remain perpetually swollen, and her vision is impaired, preventing her from seeing the TV clearly, reading, or applying makeup. Damage to her gums and compromised saliva production have resulted in dental decay. The condition has significantly eroded her self-confidence, leaving her reluctant to leave the house and transforming her into an agoraphobic. She is now more susceptible to colds and infections, and her eyes dry out easily in air-conditioned environments, requiring her to wear light sunglasses for protection. Swimming is also no longer possible due to chemical irritation to her eyes. She has completely abandoned over-the-counter cough medicines, now making her own remedies from lemon, ginger, garlic, honey, and water, and lives in fear of taking paracetamol again.

Jo lives with the constant dread of another SJS flare-up, a fear heightened by knowing friends in online SJS support groups who have died from recurrences. As Nadier Lawson, founder of SJS Awareness UK, who suffered SJS herself 30 years ago, notes, there are no definite answers as to why it suddenly strikes some people after years of drug use. She cites a 2010 case of a woman in Sweden who developed SJS after taking paracetamol for a viral infection, despite likely having used the drug for years. Scientists at the University of Liverpool are currently researching the extent to which SJS may be caused by genetic factors. Despite her efforts to live as healthily as possible, Jo’s altered appearance continues to affect her confidence and social interactions, making her too self-conscious to leave her home, and the unpredictable threat of another flare-up remains a constant, terrifying reality.