A young woman, Bethany Gamble, 20, from Birmingham, has recently shared her harrowing experience of suspected extreme withdrawal from steroid creams, which has left her with excruciating skin pain, forcing her to abandon her studies at university. Bethany had been using topical corticosteroid cream since she was two years old to manage her eczema symptoms, which included itching and bleeding. However, as she grew older, the creams became less effective, leading to severe flare-ups that caused burning pain, oozing wounds, and even hair loss. Despite her struggles, Bethany has been met with resistance from medical professionals who have refused to officially diagnose her condition as topical steroid withdrawal (TSW), insisting it is only extreme eczema.
Bethany’s ordeal began when she turned 18, experiencing unbearable symptoms such as burning sensation, intense itching deep within her nerves, and hair loss, which eventually led her to shave her head. The severity of her condition forced her to abandon her pursuit of a music production degree at the Academy of Contemporary Music in Birmingham in 2023. Despite her determination to seek a diagnosis, Bethany found herself feeling isolated and unheard by medical practitioners who dismissed her concerns about TSW. Frustrated by the lack of recognition for her condition, she turned to TikTok, where she discovered a community of TSW sufferers sharing similar experiences.
Reflecting on her distressing journey, Bethany expressed her desperation for a diagnosis and validation of her condition, stating that she would prefer to have her original eczema rather than endure the agony of TSW. Despite her self-diagnosis and research into TSW, medical professionals have continued to attribute her symptoms to extreme eczema, leaving her feeling misunderstood and unsupported. Bethany’s plea to the medical community is a call for acknowledgment and understanding of TSW, emphasising the urgent need for further research and awareness about this debilitating condition.
In response to Bethany’s petition for recognition of TSW, a joint statement by the National Eczema Society, the British Dermatological Nursing Group, and the British Association of Dermatologists has acknowledged the existence of TSW and highlighted the challenges in diagnosing and managing this condition. While topical corticosteroids are generally considered safe and effective, the side effects associated with TSW remain less understood, underscoring the importance of comprehensive research and clear diagnostic criteria. The statement advises individuals who have been using topical corticosteroids for an extended period to consult their healthcare providers for a review of their treatment to mitigate the risk of withdrawal reactions.
As Bethany continues her battle with TSW, she remains hopeful for increased awareness and recognition of this condition within the medical community. Her advocacy efforts, including participating in a petition delivery to Downing Street, aim to shed light on the reality of TSW and advocate for improved healthcare protocols for individuals affected by prolonged corticosteroid use. Bethany’s unwavering courage and determination in the face of adversity serve as a testament to the resilience of those navigating chronic skin conditions and seeking validation for their experiences.
Bethany’s story underscores the importance of listening to and validating patients’ experiences, even in cases where diagnoses may not align with conventional medical perspectives. Through her advocacy and perseverance, she is not only raising awareness about TSW but also advocating for greater recognition and support for individuals grappling with the complexities of chronic skin conditions. Bethany’s journey serves as a powerful reminder of the importance of empathy, understanding, and a proactive approach to addressing the diverse healthcare needs of patients facing lesser-known conditions like TSW.