Bay Area girl on mission to reduce stigma, raise awareness surrounding alopecia
A remarkable Bay Area girl is on a mission to reduce the stigma surrounding the disease alopecia while raising money in hopes of finding a cure.
September is Alopecia Awareness Month. The autoimmune disease is most known for causing hair loss.
Brynn Borisoff, an 11-year-old cross-country runner who just started middle school, is finding inspiration in an upcoming walk for alopecia awareness and support.
"I want to meet other people who have it and I want to just really help and give back to the community who helped me when I was going through it," Brynn said.
At 8 years old, Brynn was diagnosed with alopecia areata — a mysterious autoimmune condition that causes people to lose some or all of their hair.
For Brynn, it first appeared as a bald spot on the top of her head. Then, hair started falling out around the back of her head near her neckline.
"I remember feeling lonely because I had never met anyone else with alopecia. I didn't know what it was, or how many other people there were with it. So, I kind of felt alone, and sad," she said.
Brynn's parents took her to see a dermatologist. She underwent painful steroid shots in the affected areas. Now, three years later, most of her hair has grown back. But there is no cure for alopecia.
And some emotional scars remain.
"It really just lowers your self-confidence that you have in yourself. People asked if it was contagious. I mostly tried to hide it but sometimes I couldn't. People would ask if I had cancer and things like that," said Brynn.
"People will really trivialize that and say it's just hair, and we actually say, 'it's not just hair,'" said Nicole Friedland, the director of the National Alopecia Areata Foundation in San Rafael, known as NAAF.
Friedland said what happened to Brynn is common for kids and adults with the condition, especially the many who experience complete loss of their hair.
"I've had people in our community tell me it feels like losing a limb. When they look in the mirror, they don't recognize themselves. So, it causes deep psychological-social pain for the people going through this experience," said Friedland.
NAAF raises money to support alopecia research. Right now, the organization is gearing up for its fundraising Walk for Alopecia at the end of September.
And NAAF is also there for the emotional support for the alopecia community.
But one of NAAF's main goals is to spread awareness of the disease, an effort that got an ironic boost from Chris Rock's slap from Will Smith at the 2022 Academy Awards after he targeted alopecia patient Jada Pinkett Smith with a joke.
"We certainly don't condone violence, and we were very clear, alopecia areata is not a joke. But we did use that moment to help educate the world, we called it our Alopecia Awareness moment. We do think it has raised people's awareness of the disease which does help those living with it. There's less stigma and less bullying as awareness is raised," Friedland said.
In the same way, Brynn has turned her sadness into something positive.
She became a NAAF Youth Ambassador and traveled to Capitol Hill this summer to lobby Congress to pass a bill that would make health insurance include the cost of wigs for cancer and alopecia patients.
"If this bill gets put in place, it would just help everyone who can't afford the wigs," Brynn explained.
And something else happened, Brynn found that by helping her community, she was also helping herself.
"It was like a light switch that got flipped. And she went from being sad to realizing hey, there are other people like me. And she found this community and it built her spirits back up and she went back to being the confident little child she used to be," said Brynn's father Shawn Borisoff.
Brynn hopes to help in the effort to find a cure because she knows her hair loss could come back at any time.
But even if it does, she now has the confidence and strength to take it on. The Walk for Alopecia is on Sept. 28 at Golden Gate Park, Music Concourse in San Francisco. More information can be found at NAAF.org.
