On May 23, 2023, Kelly Barta arrived at the National Institutes of Health to figure out what was wrong with her. In a sense, she already knew: She had diagnosed herself with topical steroid withdrawal in 2012, and had gone on to become the president and executive director of a TSW advocacy group. But many doctors weren’t convinced the disorder existed, and as far as Barta could tell, most researchers didn’t care enough to dig into it. The fact that the biggest funder of biomedical research in the world was even trying to decipher its biology felt like a breakthrough.
It had started with eczema when she was a child in Grand Rapids, Mich.: itchy patches in the creases behind her knees and elbows, which spread to her hands and face when she became a preteen. Her doctors managed it with moisturizers and topical steroids. That worked, but over the years, the strength of her steroid prescriptions crept upward — and one day, when she was in her late 30s, working as a musician in Atlanta, a pharmacist casually mentioned that she should be careful, these were really potent steroids, how long had she been taking this sort of stuff? Probably around 10 years, Barta replied. “Just for a second, her eyes kind of popped open, and she got this look on her face, and it made me sick to my stomach,” Barta said.
