- Associated Press - Saturday, August 30, 2014

LINCOLN, Neb. (AP) - On the first page of the children’s book, a girl named Lottie wakes up screaming.


Strands of long hair cover her pillow, and she doesn’t understand why.

How could this be? What’s going on? Why me?

Lottie stars in “The Curse of the Fates,” written by a young woman named Sydney Olson, who woke up one day to find strands of long hair covering her pillow and didn’t understand why.

She was a girl then, just like Lottie, the Lincoln Journal Star reported (https://bit.ly/1qMmNcX ).

And she felt a lot like Lottie, too. AHHH!

“What girl wants to lose her hair?” Sydney says, sitting in her new north Lincoln apartment, a country girl from Sutton.

Sydney is 21 now. She’s a biochemistry major at Concordia University in Seward and she wants to be a doctor.

She’s bald.

She’s beautiful.

And she’s explaining how the book came to be.

But first, she explains what inspired it: an autoimmune disease that causes hair loss called alopecia.

She lists the types: alopecia areata and alopecia totalis and alopecia universalis.

The last one? That’s what she has, complete hair loss.

The hair on her head - curly and auburn - fell out gradually, she says.

The hair on her body fell out the same way. Except for a few “creepers” on her ankles, says Sydney, “damn random little hairs.”

But her eyebrows and eyelashes, gone overnight.

She misses her eyebrows. (They collect sweat.) And eyelashes, too. (Like visors, protecting eyes from dust and UV rays.)

Alopecia is a cyclical disease, she says, and unpredictable. The hair loss she had as a 10-year-old was mild. Bald patches the size of silver dollars that eventually filled in with new hair.

The second time was different.

Hair on her pillow, hair in the shower, clumps on the carpet when she pulled her hair out of a ponytail, starting in June 2012.

She tried to hide what was happening, piling her remaining curls on top of her head, under ball caps and bandannas, masking her thinning hair with headbands and buffs - like they wear on “Survivor.”

She was 20, and she was devastated.

“They say it’s just hair,” she says, “but it’s really not just hair.”

Sydney was her high school class president, participated in National Honor Society, yearbook, student council, but by the fall of 2013, she was holing up in her college dorm room, angry, tearful.

And then she came through the other side.

She points to her best friend, Chyanne Barnhill - across the room, listening. Chyanne is her roommate now, another country girl who loves horses and swing dancing and she has long red hair, shiny like a model in a shampoo commercial.

Chyanne offered to shave off her hair in solidarity. (Don’t, Sydney told her, I need someone’s hair to fix.)

“I didn’t want anyone else to go through that,” Sydney said.

It was Chyanne, along with Sydney’s mom, who picked her up when she was at her lowest, made her walk campus with them, bare head in the November air.

And Chyanne who read all the drafts of “The Curse of the Fates,” which began as a class assignment at Concordia, and was published this spring: 17 pages with black-and-white illustrations.

There’s a redhead in the book, Lottie’s best friend. And an old lady, part witch, part medieval herbalist, who shadows Lottie on her journey, offering her concoctions to cure her baldness, and then wisdom to see how strong she’d become.

Sydney has lost some friends who couldn’t see past the alopecia.

That’s cool.

“If you don’t like it, get over it,” she says. “I have no hair.”

She hopes her hair comes back - “If it doesn’t, that’s OK, too” - and she hopes to finish college in May, maybe get a master’s before she starts med school.

But this summer, she’s been busy, handing out her book in doctors’ offices, at schools and libraries. She’s been selling copies all over the U.S. and as far away as Australia and the U.K.

A little girl in Ohio read it and sent her a video. Look, Sydney, no hat.

“It was her first time not covering up her head,” Sydney said. “I felt pretty good about that.”

She wants the book to give kids the courage to be themselves, to feel good about who they are with alopecia.

You learn from your hardship, Sydney says: “You are made who you are by what you go through.”

She’s stronger now. Plus, she says, when you’re bald, people can find you in a crowd.

Chyanne looks at her best friend from across the living room. They say they are the “Island of Misfit Toys” - Chyanne with the gene that makes redheads, Sydney with the gene that makes alopecia.

They’re fine with that.

“If I saw you again with hair,” says Chyanne, “I’d think, ‘Who is that?’”


Information from: Lincoln Journal Star, https://www.journalstar.com



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