The new spokesperson on alopecia areata credits humor for lightening her attitude

Losing all her hair leads to a book and a national role for a Portland woman

Sunday, June 29, 2008

The Oregonian

For the first few years after I met LeslieAnn Butler, I had no idea she was bald.

I noticed she was beautiful. I knew she was a talented Portland artist and writer. We were neighbors, and we became friends. We walked together, gave each other advice, went on double dates.

Then one day someone asked, "Why does LeslieAnn wear a wig?"

"She doesn't," I said. "That's crazy."

But when I recounted the conversation to LeslieAnn, she paused and then said, "It's true. I have something called alopecia areata. I don't have hair anywhere on my body."

"Not anywhere?" I asked. She nodded.

Back then, LeslieAnn rarely shared her diagnosis with people.

Now that's changed, in a big way. My friend has gone from secret-keeping to becoming a spokeswoman for the National Alopecia Areata Foundation (www.naaf.org). And now she's written and illustrated a very funny, very helpful book called "If Your Hair Falls Out, Keep Dancing!"

She's brought her wigs out of the closet.

LeslieAnn was a recent U of O graduate, working as a model, when her hair began to fall out.

"I first noticed a spot, the size of a quarter, on the back of my head when I was going to a photo shoot," she says. "I put some brown eyeshadow on it and went off. It was really scary."

She went to a dermatologist. "He said, 'Oh, it's alopecia areata. It's caused by stress.' By the way, we now know stress is not the cause of alopecia. But he gave me a prescription for Valium. I was sleeping all day long."

When she wasn't sleeping, she was researching. "There really wasn't much knowledge about it then." And because she was afraid to tell people what was happening, "I had to kind of suffer with it."

In the next few years LeslieAnn tried many different experimental treatments. None worked. "My hairline just kept receding all the way around; in the back, around my ears. It was really bad."

As a model she'd used falls and other hairpieces. Now she began to wear full-head wigs.

And then her eyelashes fell out. "I could handle the rest of it, but that wasn't fun."

While men often shave their heads, it's still unusual to see a woman without hair. "In our culture," LeslieAnn says, "hair defines women, our femininity, our sexuality. You can't look at a woman's magazine without seeing ads for shampoo and conditioner and volumizer. So when you start losing your hair, it's pretty hard."

Alopecia is an autoimmune skin disorder in which the body's immune system mistakenly reacts to its own hair follicles as if they were foreign bodies.

Some people lose patches of hair; occasionally it grows back. Others, like LeslieAnn, lose it all, permanently. Scientists still don't know what causes it, although there appears to be a genetic component in some cases. There is no known cure and no guaranteed treatment.

As LeslieAnn grieved her hair loss, she felt angry at her own body. "I thought, how dumb is my immune system? What's going on here?"

She worked hard to find realistic-looking wigs. She applied false eyelashes. She had eyebrows tattooed on. And still she told very few people.

"I wanted people to focus on who I am," not her medical condition, she says.

But if she was dating someone, "and they were going to make a grab for my hair," she had to explain. Most times, she says, "guys were great."

But there were exceptions. She remembers a man she had dated "maybe three times. We were standing at the front door of my house and he was going to caress my neck.

"I told him, 'I have something to tell you. I have alopecia areata, an autoimmune disorder, and I don't have hair anywhere.'

"He looked at me with giant eyes and he couldn't talk. He was going, 'Uh . . . uh . . . uh . . . ' and backing away. And he fell down the stairs. He mumbled something about having to go" and made his escape.

LeslieAnn was disappointed, she says. But today the story just makes her laugh.

In fact, humor has a lot to do with LeslieAnn's acceptance of her alopecia. Her book is not just filled with information and practical advice about treatments, wigs, lashes, handling interpersonal situations and helping children with the condition. "It's mainly about attitude," she says.

"At the time of your diagnosis, it's certainly not very funny. But as you navigate the waters of this condition, humor really helps." After all, she says, "it could be a lot worse. You could have something that could kill you." And since alopecia does not kill, "you can control your emotional outlook."

LeslieAnn interviewed women across the country about how they handle alopecia.

In one of her favorite stories, "a woman was wearing her wig and mowing the lawn." She walked under a tree and a limb pulled the wig off her head. Startled, she turned to grab the wig, "and the lawn mower took off, heading for a pedestrian."

Fortunately the man was able to grab the lawn mower. The woman, wig in hand, thanked him.

LeslieAnn has had years to adapt to her condition. The Internet delivered information and networking sites for people with alopecia. She found herself giving advice to others online; that led to an opportunity to be a national spokesperson.

She thought hard and decided to accept. Speaking openly about alopecia "was scary," she said. But as she did, she realized she had information many people, especially women and girls, really needed.

So she wrote a book. And then she called all her friends and told them she had alopecia. "I'm very happy about it," she says of her new openness. "I feel comfortable now."

That doesn't mean you'll see her with a naked scalp at book signings -- Aug. 12 at Brenda Kay Hair Specialties and Aug. 13 at the OHSU Center for Women's Health -- although she does support women who choose not to wear wigs. "They're great," she says. "They help educate."

"But the most important part of my book is about attitude. When a woman feels good about herself," it doesn't matter what's sitting on her head.

Buy "If Your Hair Falls Out, Keep Dancing!" at www.leslieannbutler.npauthors.com or www.amazon.com

Margie Boule: 503-221-8450; marboule@aol.com