For many people with body-focused repetitive behaviors, though, the predominant effects are cosmetic, and the consequences emotional and social.
Mindy Mitchell, an insurance agent who lives in Shelbyville, Tenn., noticed in August 2017 that her elder daughter, Alyssa, who was 9, had begun to pull hair from her scalp. Within six months, Alyssa was bald but for a strip along her crown.
Ms. Mitchell, who is 36, was alarmed, but unsure of what to do. Kids at school began to tease Alyssa for her baldness, calling her names like “cancer girl.”
“Her having to explain that 20 times a day is really upsetting,” Ms. Mitchell said. She took Alyssa to be fitted for a wig.
When Ms. Mitchell eventually searched online, she came across the nonprofit TLC Foundation for Body-Focused Repetitive Behaviors, a patient-advocacy organization for the disorders. The organization works to promote awareness of the behaviors so that affected people can better understand their conditions and seek evidence-based treatment, said Jennifer Raikes, its executive director.
The group maintains an online database of clinicians with relevant experience, and convenes an annual conference for patients, family members, clinicians and researchers. Ms. Mitchell and Alyssa were among more than 440 attendees at this year’s gathering in Chantilly, Va., in May. Alyssa befriended other kids who came — some of whom also wear wigs. Ms. Mitchell left with some recommendations for treatment options for Alyssa close to home.