This woman used an eczema cream for more than 10 years, and when she stopped, her arms turned red, her skin “felt like it was burning down to the raw flesh”, and she had an itch she describes as a panic attack

Kelly Barta scratched until her skin split.

She had eczema for as long as she could remember and, like millions of people, used steroid creams to control it. But in 2012 her skin stopped responding: the itching became unbearable, she said, “like a panic attack” that made her want to rip off her skin. The places she scratched oozed. She spent her days naked on towels, peeling off crusted skin and bathing every two hours, because even clothes hurt. According to her biography, she was bedridden for more than a year and a half.

She diagnosed herself with topical steroid withdrawal syndrome (TSW), a condition many doctors doubted existed. Today it is considered a diagnosis of exclusion, and standardized criteria are still lacking, although this year the CDC approved an ICD-10 code to identify it.

Barta turned her ordeal into a cause: she chaired the ITSAN network, which supports more than 10.000 people with TSW, and today leads the Coalition of Skin Diseases. In 2023 she traveled to the NIH as a study participant and co-author. How many people still don’t know what’s happening to their skin?