BBC
Bethany Gamble was prescribed steroid creams at the age of two to help manage her eczema. For many years, these treatments effectively controlled her skin condition, allowing it to remain a minor aspect of her life.
However, this stability changed dramatically.
At 18, Bethany began to experience a significant deterioration in her skin health. The small patches of eczema in the bends of her elbows and behind her knees began to expand uncontrollably.
"My skin was hot, inflamed, and red. It started to crack and ooze, and the itch felt bone-deep. It overtook my entire body, and soon it infiltrated every aspect of my life."
By the age of 20, the severity of Bethany's pain rendered her bedridden, necessitating her mother to take leave from work to care for her. She was unable to feed herself.
The most distressing factor for her was the lack of belief from medical professionals.
"I faced constant gaslighting from doctors," says the 21-year-old from Birmingham. "They continually insisted it was merely my eczema and prescribed more steroids.
"I have had eczema all my life - this felt different."
Bethany is part of a growing community of individuals documenting their experiences with topical steroid withdrawal (TSW) on social media, utilizing the hashtag TSW. Videos associated with #TSW on TikTok have garnered over a billion views.
Known alternatively as red skin syndrome, TSW remains under-researched, leading some general practitioners and dermatologists to struggle with both diagnosing and treating the condition.
Many experts contend that TSW is a debilitating reaction to steroid creams - a primary treatment for an estimated eight million eczema sufferers in the UK. Others argue that it represents an extreme flare-up of eczema or other specific skin conditions and remain skeptical regarding its existence.
Although TSW is considered relatively uncommon, the influx of individuals sharing visual evidence and narratives of their red, inflamed, and peeling skin has spurred the first research efforts of its kind in the UK.
Professor Sara Brown, a consultant dermatologist at the University of Edinburgh, has been profoundly influenced by the "inexplicable" symptoms she observes in her patients, as well as the distressing posts she encounters online. She has successfully secured funding from the National Eczema Society to investigate the condition further.
"We are observing unexplainable patterns in TSW that defy current understanding of eczema," she states. "Symptoms include thickened and lax skin, termed 'elephant skin', excessive shedding, and sharply defined regions of redness adjacent to normal skin."
Along with her co-researcher Dr. Alice Burleigh from Scratch That, a patient advocacy group for TSW, they have enlisted hundreds of participants throughout the UK for the study, analyzing symptoms, saliva samples, and skin biopsies to discern why certain individuals develop TSW while others do not.
Henry Jones, 22, from High Wycombe, is among those participating in the research and identifies himself as a "TSW warrior," driven by a desire to raise awareness about the condition.
He recounts transitioning from a teenager who applied steroid creams for eczema "occasionally" to experiencing such debilitating symptoms that he had to withdraw from university.
"My university GP repeatedly told me it was merely eczema – and continued to prescribe more steroid cream. Something felt amiss."
Henry explains that the more he applied the cream, the more severe his symptoms became. "I was incredibly red, my skin felt painfully tight, then it would flake, ooze, and the cycle would start all over again."
As the eczema spread across his entire body, moving became painful, and he found himself unable to go outside, socialize, or continue his studies. He admits that there were moments when he contemplated ending his life.
"My world," Henry describes, "plunged into darkness, overshadowed by the agony connected to my skin."
TSW's manifestation can vary based on skin pigmentation. On lighter skin, it appears as an intense red, while on darker skin tones, it might present as deep purple or brown, or even with a grayish hue, complicating detection and diagnosis.
Karishma Leckraz, from Kent, reveals that she spent years in denial, believing that her experience could not match what she had seen in posts from white individuals on social media.
"TSW stripped everything away from me. I hid from society for an extended period because my skin was in such poor condition, resulting in intense pain, sleeplessness, and a lack of self-recognition," she explains.
At 32 years old, Karishma ceased using steroid creams five years ago, and while her skin has primarily healed since then, she still grapples with mental health challenges.
"My social anxiety is overwhelming."
Andrew Procter, representing the National Eczema Society, acknowledges that while steroid creams remain effective for most users, patients find themselves "caught between a rock and a hard place."
"We understand that steroids are beneficial for millions, yet we also face a condition that, at present, lacks an explanation.
"This understandably generates significant fear. That is why further research is urgently required."
For those exhibiting TSW-like symptoms, particularly those already dealing with anxiety and uncertainty about their diagnosis, accessing appropriate treatment can present additional hurdles.
GPs can refer patients to dermatologists for specialized care, but lengthy waiting times of often over a year are common. For the majority, steroid creams remain a primary treatment option.
At the Royal London Hospital, consultant dermatologist Dr. Alia Ahmed operates a specialized NHS clinic for individuals with chronic skin diseases, offering various treatments such as psychological support, immunosuppressants, and phototherapy aimed at reducing inflammation and calming immune responses.
"The psychological repercussions, in addition to the physical symptoms, are immense," notes Dr. Ahmed, a member of the British Association of Dermatologists. "We must collaborate with patients to establish the most effective treatment strategies."
Officially recognizing TSW as a severe reaction to steroid creams, the Medicines and Health Regulatory Authority (MHRA) of the UK asserted this designation in 2021, although it still considers the condition relatively rare.
The MHRA cautions that prolonged use of steroid creams can lead to serious side effects, including thinning of the skin, adrenal suppression, or, in very rare instances, Cushing's syndrome—a disorder arising from extended exposure to high cortisol levels through steroid use.
Manufacturers have since implemented new labeling systems to indicate the potency of creams, ranging from mild to very powerful, to enhance clarity for users.
The Royal College of GPs maintains that steroid creams are a "safe and effective treatment for numerous skin conditions," but notes that in "rare instances" individuals may experience reactions associated with "prolonged or inappropriate use." Patients are advised to discuss any concerns about their treatment with their GP and to avoid discontinuing medication without professional guidance.
Rebecca Ebbage, 32, describes the onset of her TSW symptoms as the moment her skin began to control her life. She discontinued both topical and oral steroids in July 2022 following a severe flare-up.
"My skin dictates my activities, diet, clothing choices, and even my ability to venture outside."
After a lengthy wait of a year for a dermatologist appointment, she was offered various immunosuppressants over an 18-month period, but "nothing proved effective."
Ultimately, Rebecca chose an alternative route and began fundraising for treatment—costing £180 per session—at one of the few private clinics in the UK providing Cold Atmospheric Plasma (CAP) therapy. This relatively new treatment, not yet officially recognized by the NHS, employs charged gas particles to mitigate inflammation and eliminate bacteria from the skin, thereby potentially accelerating the healing process.
Following nearly a year of CAP therapy, Rebecca reports that she is beginning to recover, though she emphasizes that it is not a cure.
Meanwhile, Henry is receiving care from a TSW specialist at the Royal London, having finally attained an official diagnosis in August 2025 after enduring three years of the condition. He is currently on immunosuppressants and is starting to feel "normal again."
Karishma, who once struggled to recognize herself, now sees her image represented in social media campaigns and advertisements. She has become the face of various initiatives aimed at raising awareness about debilitating skin conditions.
"I have spoken with thousands of individuals globally regarding their skin conditions. I want to ensure that no one else endures the hardships I have faced."
After years of grappling with her symptoms, Bethany is now taking biologics, a newer class of medication targeting inflammation, and reports that she is finally regaining her "life," recently landing her first job.
Reflecting back, she reveals that in previous times, she might have felt the urge to lash out at anyone suggesting she simply stop scratching. Today, her message to those enduring similar struggles is unequivocal.
"Do not feel guilty, do not internalize blame, and advocate for your need to be believed."
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