A young woman from Kent, Sophie Cooper, is bravely sharing her harrowing experience with topical steroid withdrawal (TSW), a condition that has dramatically altered her life since the end of 2025. At just 21 years old, Cooper has faced severe challenges due to a side effect of the eczema treatment she underwent for nearly two years, which has left her with debilitating symptoms and a desperate desire to raise awareness about the condition.
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Sophie Cooper has dealt with eczema since childhood, but her symptoms worsened significantly in 2023. Seeking relief, she turned to her general practitioner who prescribed a regimen of topical steroid creams. Over a ten-week period, she transitioned from a medium-strong formulation to a more potent option. Unfortunately, after exhausting her supply of prescribed creams without notable improvement, she decided to discontinue their use. Cooper’s doctor subsequently suggested an even stronger steroid cream, but after two years of inconsistent application, she ultimately stopped using all topical treatments.
“It’s really when my life changed for the worse,” Cooper remarked, recalling the moment she experienced inflammation, severe itchiness, and a burning sensation on her skin. These distressing symptoms were attributed to TSW, a serious condition that can develop after ceasing the use of topical steroids. According to the National Eczema Association, TSW can lead to severe skin issues such as shedding, blistering, and excruciating itchiness, along with emotional struggles like insomnia and depression.
Compounding her suffering, Cooper only became aware of TSW’s potential risks after reading the fine print on the medication. Unfortunately, this realisation came too late. In a matter of weeks, she found herself covered in painful, red sores across 95% of her body. The intense scratching that often accompanies this condition has been described by her as “bone-deep.”
The impact of TSW on Cooper’s daily life has been nothing short of devastating. “I have to change my bedsheets every morning and vacuum the bed and the floor from all the skin that comes off in my sleep. I have blood on the sheets every day,” she explained. The pain of showering has become unbearable for her, likening the experience to “acid being poured on me” or feeling as if she is suffering from a multitude of paper cuts.
Her attempts to engage in everyday activities have been thwarted by the condition. She shared a particularly poignant moment when she went out with her boyfriend for a meal, yet felt unable to eat due to the sores on her face. The condition even affects her sleep; because of the oozing sores, she is forced to recline upright at night.
Currently, Sophie finds herself on a waiting list for ultraviolet light therapy, which she hopes could alleviate her symptoms. However, the lengthy wait has taken a toll on her physical health, contributing to a hospital stay earlier this year after she developed cellulitis from one of her open sores. She described her ongoing battle with insomnia, nerve pain, and difficulty regulating her body temperature as “hell on earth.”
The changes to her life have also reshaped her self-identity. Once confident and active on social media, Cooper now spends many days at home, feeling as though she has transformed into a different person. “Some people mistake me for a burn victim,” she said, noting that strangers have approached her with concerns about her wellbeing. Despite the daily struggles, she reflects, “At least no comments about it can hurt me — because nothing can hurt me more than my own skin does.”
In an effort to bring attention to TSW, Sophie has taken to social media, hoping to educate others and connect with individuals facing similar challenges. “I yearn to feel normal again and want to reclaim my identity,” she expressed. Cooper’s journey highlights the isolation many experience due to this rarely discussed condition, but she remains determined. “It’s a very isolating condition, and some of the worst moments of my life, but I’m here and alive, and trying to get through it. I’m not letting my skin stop me!”
As she continues to navigate this complex health issue, Cooper is advocating for better awareness and research on TSW, underscoring that the condition extends far beyond just “red and itchy skin.” Her story serves not only as a personal testament but also as a call to action for others to understand the realities of TSW, ensuring that no one else feels alone in their suffering.