A 21-year-old woman from Canterbury has been left with sore, bleeding skin across most of her body after using prescribed steroid creams to treat her eczema. Sophie Cooper developed the chronic skin condition as a child. When it worsened in 2023, her GP prescribed steroid creams. Despite three 10-week courses of increasingly strong creams, her itchy arms did not improve. After stopping the treatment, she began suffering from Topical Steroid Withdrawal (TSW), a reaction that is often misunderstood.
Living with TSW
Sophie described the itching as 'bone deep', saying she felt like clawing her skin off. On sick leave from her sales job, she only learned about the withdrawal risk by reading the small print on the boxes. Within weeks, red, sore, and oozing patches spread across her face and body. Even after 18 months off the creams, her condition remains debilitating. She cannot work and says showering feels like an 'acid bath'.
Sophie has started sharing videos on TikTok, where she has around 9,000 supporters. A recent paper by skin experts revealed that TSW is widely discussed on social media, with the hashtag '#TSW' accumulating over 1.1 billion views. However, a survey of UK dermatology clinicians found that only 34% believe TSW is a distinct condition, leaving sufferers like Sophie feeling unheard.
Daily Struggles
Sophie said she must change her bedsheets every morning and vacuum the bed and floor to remove the skin that sheds overnight. She has blood on her sheets daily. Showers feel like acid being poured on her, or like having sunburn with a thousand paper cuts. She recalled going out for a burger but being unable to eat it because moving her jaw opened sores on her face, causing them to weep. When the oozing is severe, she cannot lie down to sleep and must sleep sitting up.
Seeking Treatment
Sophie first suspected TSW in November last year. She is now on a waiting list for ultraviolet light therapy (UVB), which the NHS says can reduce inflammation, and for injections that might help. The condition now covers almost her entire body except her feet. She suffers from insomnia, nerve pain, temperature regulation issues, bleeding, and oozing, calling it 'hell on earth'. Some people mistake her for a burns victim, and strangers approach her in the street to ask if she is okay.
In April, she was hospitalised with cellulitis from an open sore. She screamed in pain when a doctor used an alcohol wipe on her arm before an injection. While delirious, she begged to be put in an induced coma to escape the pain and itching, but medics refused.
Raising Awareness
Sophie spoke out to raise awareness about the dangers of steroids, saying she was not warned of the risks. She has been waiting for a patch test on the NHS for three years but suspects they will refuse now that TSW has spread to her back. Despite her difficulties, she was recently confirmed as a finalist in the Miss Great Britain Kent contest. She said, 'I'm not letting my skin stop me.'
