Crystal girl helping to spread awareness of alopecia

Crystal girl helping to spread awareness of alopecia

Crystal girl helping to spread awareness of alopecia

A 6-year-old Crystal girl wants others to know that not having any hair isn’t always a bad thing.

Keira Johnson and her identical twin sister, Ava, do pretty much everything together but the obvious difference is Keira doesn’t have any hair.

“Initially, for like over a year or more, it was just the one spot, and then for whatever reason her body had a total hair loss event,” said Leslie Johnson, the girls’ mother.

Over the years, Keira’s hair loss worsened, with her hair becoming thinner. Leslie says the treatment was inconsistent.

“Everything would always start to work and then stop,” Johnson said.

Doctors told Keira she has alopecia, an autoimmune disease where the body attacks hair follicles, causing hair loss. There isn’t any known cause and sometimes it can lead to complete hair loss.

When she first heard the diagnosis, Johnson admitted she didn’t exactly know what it was and, at times, people in public still think her daughter has cancer.

“‘Mama, why are people asking that I’m sick?'” Johnson says her daughter will ask.

“Don’t assume, please don’t assume that just because someone’s bald that they’re sick,” Johnson added.

The family believes it’s something that Keira will work through for the rest of her life, but it’s why they’re on a mission to spread awareness of the disease.

“We wanted to make sure that everyone knew why she was bald and to be able to advocate for her because we really feel that the more people know, the less chances there are for bullying,” Johnson said.

On Sept. 30, the family is welcoming others to Becker Park for the area’s first-ever Walk for Alopecia. The goal is to not only educate but also connect with others who may have a similar story.

“She was like, ‘Let’s do a big party,’ and I was like, ‘OK,'” Johnson said.

Proceeds for the vent will help benefit the National Alopecia Areata Foundation, which provides things like wigs to people who struggle with hair loss.

“Even though she doesn’t wear it very much, it was a hugely transformative experience,” Johnson said of her daughter’s wig.

The family also says there will be a haircut benefit the week before the walk at Studio Alles in Roseville.

Aside from helping out in the garden, the Johnsons’ family time includes reading books that teach important lessons.

“It’s really just about Kiera and really letting her know that she’s not alone in her hair loss journey and helping to raise awareness for visible differences,” Johnson said.