Just one of the guys

Boys with a rare condition that causes balding get together for friendship and solidarity that they can’t get anywhere else.

By Jennifer Langston

Herald Writer

LYNNWOOD — Kyle Wood said his classmates haven’t seen many kids who have absolutely no hair.

The eight-year-old sort of wished his bald bowling partners at the Brunswick Majestic Lanes last weekend could go to his Bothell school with him — to show he’s not the only one.

Wood and two other boys came to the bowling alley to throw some strikes and, for the first time, to meet other kids in this area who look just like them.

They all have alopecia, a non-life-threatening but incurable disease of the immune system that causes hair to fall out. It strikes about

2 percent of the population. Some get patchy bald spots on their head; others lose all hair, including eyebrows and eyelashes.

Christopher Velez-Ramirez, his perfectly bald head covered with a white Nike baseball cap, came all the way from Fort Lewis to hang out with Wood and Alex Salud.

Hucking yellow bowling balls that weighed one-sixth as much as they do, they made friends cautiously but quickly, easily accepting the others.

"I haven’t seen anyone else that had alopecia before," said Velez-Ramirez, 9. "It’s cool."

Rietta Costa, an Everett resident who’s had alopecia for more than 20 years, said she wished she’d known other children with the disease when her eyebrows and hair started falling out in clumps at the age of 12.

She said it blew her away the first time she attended a conference and saw an entire room of people who looked just like her.

"When I … saw all the bald people out there, I said, ‘Wow, we could all be in an alien movie,’ " she said. "It would have made a lot of difference. Instead of trying to hide it, it would have made it easier to accept it."

Costa, sister of state Sen. Jeralita Costa, D-Marysville, is gearing up for another run at the state Legislature next year. She’s spent the past several years lobbying for a bill requiring insurance companies to pay for cranial prostheses — a kind of wig — for people with alopecia.

The bill, which has passed the Senate several years in a row, has never gotten through the House intact. Last year it did receive a hearing for the first time, she said.

Insurance companies will often cover the costs of steroid injections to stimulate hair growth. But that doesn’t work for everyone, Costa said, and can cost a person with spotty alopecia $2,000 a year.

The insurance companies consider the wigs to be cosmetic. But those who’ve experienced total loss say the hair replacement, which can cost between $1,000 and $3,000, is their only permanent solution.

Shannon Salud, Alex’s mother, said the disease in some ways isn’t as troubling for boys, because baldness is an in-look right now.

Bobbie Wood, Kyle’s mother, said she’s known children with the disease who’ve been so depressed about their appearance they’re suicidal.

"That’s a health issue," she said.

She decided to organize regular get-togethers for local children with alopecia after attending a conference in Oakland, Calif., this June, where Kyle met other kids with the disease for the first time.

Normally shy, Kyle got up hours early every morning and couldn’t wait to leave the hotel room. He was happier there than on their Hawaiian vacation, she said.

He’s become more self-assured since then, she said. If he got bullied or teased before, he’d come home and cry. Now he gets angrier, asking her to call a principal or parent to put a stop to it.

"He still has issues he deals with, but he’s a lot more confident," Wood said. "This is another chance for him to be around other kids just like him."

You can call Herald Writer Jennifer Langston at 425-339-3452

or send e-mail to langston@heraldnet.com.