Bethany Gamble was given steroid creams from age two to manage her eczema. At age 18, her eczema began to spread, becoming hot, inflamed, red, cracking, oozing, and intensely itchy. By age 20, she was in so much pain she could not get out of bed, could not feed herself, and her mother had to take time off work to nurse her.
Bethany says doctors constantly gaslit her, telling her it was just eczema and offering more steroids. Bethany is one of a growing number of people documenting their experiences on social media using the hashtag TSW (topical steroid withdrawal). #TSW videos on TikTok have been viewed more than a billion times.
We're seeing patterns in TSW that cannot be explained by what is known about eczema. Symptoms like thickening and laxity of the skin, so-called 'elephant skin', extreme shedding and sharply defined areas of redness next to normal skin.
TSW, also known as red skin syndrome, is under-researched, with some GPs and dermatologists struggling to diagnose or treat it. Some experts believe TSW is a debilitating reaction to steroid creams, while others believe it is a severe flare-up of eczema or other skin conditions and are not convinced it exists at all. TSW is viewed as relatively rare.
The growing number of people sharing pictures and accounts of red, inflamed, peeling skin on social media has triggered the first research of its kind in the UK. Professor Sara Brown, a consultant dermatologist at the University of Edinburgh, secured funding from the National Eczema Society to research TSW. Professor Sara Brown says patterns in TSW cannot be explained by what is known about eczema, including symptoms like thickening and laxity of the skin ('elephant skin'), extreme shedding, and sharply defined areas of redness next to normal skin.
Professor Sara Brown and co-researcher Dr Alice Burleigh have recruited hundreds of people across the UK for a study analyzing symptoms, saliva samples, and skin biopsies to figure out why some people get TSW and others do not. Henry Jones, 22, from High Wycombe, is taking part in the research and describes himself as a 'TSW warrior'.