Hundreds contact BBC about mystery skin condition ‘hell’ – but doctors can’t agree it exists
Hundreds contact BBC about mystery skin condition ‘hell’ – but doctors can’t agree it exists
A growing number of people are sharing their experiences of a skin issue dubbed ‘hell’ by sufferers, sparking debate over its classification
Two weeks ago, a BBC News article explored the challenges posed by a skin condition that has gained traction on social media, known as topical steroid withdrawal (TSW). While some view it as an extreme form of eczema, others argue it represents a distinct health problem. Despite widespread patient reports, medical professionals remain split on its nature. The piece received millions of views, with 240 individuals reaching out to share their stories. This has led to renewed discussions about the condition’s validity and the disconnect between patients and practitioners.
Bethany Norman, a 36-year-old mother, recounted her struggle with TSW after refusing steroid creams for her baby’s eczema. “Look at what this medication has done to me? Why would I put it on my own son?” she remembers shouting while bandages covered her arms. For Norman, the creams prescribed to manage her lifelong eczema had triggered a severe reaction, leaving her with open sores, persistent itching, and relentless skin flaking. She described feeling trapped within her own body, determined to protect her newborn from similar suffering.
“I’ve been told by countless medics that all I have is a severe flare up of eczema and steroid creams will sort it. They just made it worse.” — Bethany Norman
Topical steroids, widely used since the 1950s, have long been a cornerstone of eczema treatment. Available in varying strengths—from mild hydrocortisone to prescription-only formulations—they have helped countless individuals manage symptoms and maintain daily life. Yet, a faction of patients claims these treatments now cause more harm than good, leading to a crisis of confidence in their efficacy.
Jenna Crosbie, a GP trainee in north Wales, initially struggled to grasp why a patient like Norman would avoid steroids. Her medical training had emphasized their role as first-line interventions. However, Crosbie’s own experience with TSW shifted her perspective. While working night shifts, she noticed her skin flares worsening after using higher-potency steroids. After researching, she realized her symptoms diverged from typical eczema. “I wouldn’t wish it on my worst enemy,” she said, reflecting on the ordeal.
Medical uncertainty and communication gaps
Dr. Pippa Bowes, an urgent care specialist in Southampton, highlights the challenges in diagnosing TSW. “There can be a breakdown of communication,” she noted. “Patients often feel unheard, and some doctors find it hard to comprehend their symptoms.” The condition’s symptoms—intense itching, skin peeling, and redness—can mirror those of eczema, making it difficult to distinguish.
Dr. Dean Eggit, a GP in Doncaster, suggests that overprescription might contribute to the problem. He acknowledges that general practitioners sometimes rely on steroids without thoroughly investigating underlying causes. “The initial signs of TSW can resemble the eczema rash itself,” he explained. “This creates a risk of continuing to apply treatments that may be exacerbating the issue.”
Guidelines from the National Institute for Health and Clinical Excellence (NICE) recommend a phased approach to eczema treatment, starting with emollients and progressing to steroids. However, these protocols include follow-up checks to ensure proper usage. Dr. Adrian Hayter of the Royal College of GPs noted that repeat prescriptions often bypass these steps, leaving patients vulnerable to prolonged steroid dependence.
