This story is a part of The Truth About Hair Loss, an exploration into why we lose our hair, the emotional and monetary costs that come along with the experience, and what the future of treatment (and acceptance) could look like.
In January of 2021, Kristyn Wells sat on her couch at home and recorded one of her most vulnerable videos. She started a YouTube channel while in quarantine during COVID-19, initially sharing fitness and lifestyle tips. But the video she posted on January 29 was different. Wells decided to share her hair loss journey with the world for the first time.
More than halfway into the 10-minute video, she removes her scarf to reveal a patch of baldness along the top of her head.
What follows is a few deep breaths as she adjusts to the reality of full exposure. Finally, she says, “I did it. I did it.”
Wells was diagnosed three years ago with central centrifugal cicatricial alopecia (CCCA) by a board-certified dermatologist in Columbia, South Carolina. “I had never heard of it before,” says Wells of the condition. “Ever.”
What is centrifugal cicatricial alopecia?
CCCA is a type of hair loss that starts at the crown of the scalp and spreads outward. Cicatricial comes from the Latin word for scar, which presents in CCCA as permanently damaged hair follicles that have been replaced by scar tissue.
Symptoms of CCCA, which include itching and/or burning of the scalp, and noticeable broken hair in the crown area are usually mild at first, explains Ife Rodney, a board-certified dermatologist in Fulton, Maryland. This usually begins to happen when patients are in their early 30s, she says, though she’s seen women in their 20s come in for CCCA treatment as well.
When Wells noticed gradual thinning of her hair in her early 30s, she always assumed she had “female pattern baldness,” also known as androgenetic alopecia, a condition that runs in her family.
In its early stages, CCCA can be misdiagnosed as androgenetic alopecia because they can look very similar, with thinning in the crown area of the scalp, says Yolanda Lenzy, a board-certified dermatologist in Chicopee, Massachusetts.
To ensure an accurate diagnosis, Lenzy performs a biopsy, where a pathologist can then see the hair follicles up close. Whereas androgenetic alopecia is characterized by shrinking of the hair follicles resulting in thin, barely noticeable hair, the key indicators of CCCA are inflammation and damage to the follicles.