While some people only lose hair with FFA, the condition can also cause physical discomfort due to the inflammation of the hair follicles—about 25 percent of people with FFA report pain and itching. “It felt like microscopic bugs were moving underneath the surface of my scalp,” says Marilyn Ey, a 75-year-old from Dallas, Texas who was diagnosed with FFA in 2007, after starting menopause in the mid-1990s.
Other people with FFA experience hair follicle inflammation without any actual hair loss. “I have FFA patients whose hairlines are beet red,” says Lindsey Bordone, a board-certified dermatologist at Columbia Medicine in New York City. “Their hairlines haven’t budged at all, but they’re chronically inflamed.” If that inflammation is left untreated, FFA will always progress to hair loss, says Dr. Mirmirani.
When hair loss does occur, recession can progress to mid-scalp—both Cawthern and Ey say their hairlines have receded about four inches in total. Once the hair falls out, people often develop waxy, white, shiny dots of scar tissue over the follicles—indicating the hair follicle is dead and won’t recover, according to board-certified dermatologist Jeffrey Fromowitz, founder of Dermatology of Boca in Boca Raton, Florida.
Along with physical symptoms, FFA can take a major toll on quality of life and mental health. “The way we present to the world is the skin of our face, our hair, and our eyebrows. So whenever we suffer loss or issues with those areas, the psychological and emotional impact are tremendous,” says Dr. Fromowitz.
And it’s often difficult for FFA patients to hide their hair loss due to its location (for example, you could more easily conceal hair loss on the crown with a hair piece). Often coming at the same time as other age-related changes, the condition can be especially hard. “Turning 40 was hard for me with face changes, wrinkles, and droopiness. The combination of those with the hair loss has been intense,” says Cawthern.
What causes frontal fibrosing alopecia?
Some degree of hair loss is normal. Every day, you can shed up to 100 strands of hair—but most people don’t notice, because other hair is actively growing at the same time. Alopecia, the medical term for hair loss, happens when something stops the hair from growing, resulting in noticeable thinning or bald spots.
