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Bethany Gamble has been managing eczema since she was a toddler, relying on steroid creams prescribed from the age of two. For many years, these treatments kept her skin condition under control, allowing it to remain a minor aspect of her daily life. However, everything changed dramatically when she turned 18. At that point, the small, manageable patches of eczema that appeared in the creases of her elbows and behind her knees began to spread extensively.
Her skin became intensely inflamed, red, and painfully cracked. Bethany recalls the itch as “bone deep,” describing how the condition took over her entire body and subsequently dominated her life. By age 20, her symptoms escalated to such a debilitating level that she was confined to bed, unable to care for herself, prompting her mother to take leave from work to provide full-time care. Distressingly, Bethany felt that the medical professionals she encountered dismissed her plight. She says, “I was constantly gaslit by doctors. They kept telling me it was just my eczema and offering me more steroids,” emphasizing that her experience was distinctly different from the eczema she had known all her life.
Bethany’s experience is not isolated. There is a rising movement on social media where individuals share their stories under the hashtag TSW, which stands for topical steroid withdrawal. These accounts, particularly on platforms like TikTok, have garnered massive attention, with videos related to TSW viewed over a billion times. Despite this visibility, topical steroid withdrawal—also referred to as red skin syndrome—remains poorly understood. Some healthcare professionals struggle with diagnosis and treatment, partly because the condition is still inadequately researched. While some believe TSW is a severe adverse reaction to steroid creams used to treat eczema, others think it might be a form of extreme eczema flare-up or doubt the condition’s existence altogether.
This uncertainty has spurred new research efforts in the UK. Professor Sara Brown, a consultant dermatologist at the University of Edinburgh, has been deeply affected by the troubling symptoms observed in her patients and by the desperate posts she has seen on social media. She secured funding from the National Eczema Society to study the condition further. Professor Brown notes, “We’re seeing patterns in TSW that cannot be explained by what is known about eczema,” pointing to distinctive symptoms such as thickened, lax skin, extreme shedding, and sharply demarcated areas of redness adjacent to normal skin. Together with Dr. Alice Burleigh, from the patient group Scratch That, they have recruited hundreds of participants nationwide to analyze symptoms, saliva samples, and skin biopsies in hopes of understanding why some develop TSW while others do not.
Among those involved in the research is Henry Jones, a 22-year-old from High Wycombe, who calls himself a “TSW warrior” because of his commitment to raising awareness about this condition. Henry’s journey began as a teenager when he used steroid creams occasionally to manage eczema. Over time, his skin worsened dramatically, forcing him to leave university. “My GP at university kept telling me it was just eczema – and kept prescribing me more steroid cream. Something didn’t feel right,” he explains. With continued use, his skin became painfully red, tight, flaky, and oozing in repeated cycles. His symptoms spread over his entire body, causing immense pain and preventing him from leaving home, socializing, or studying. In moments of despair, Henry even contemplated suicide. He describes the impact as turning his life into “a dark hole caused by the weight of my skin.”
Read the full article from The BBC here: Read More
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