Alopecia: It's no fashion statement

New support group will help deal with trauma of hair lossOctober 

2004 KEVIN PARKS

This Week Staff Writer Smiling broadly, Kirk A. Wyckoff extended his hand and said, "Hi, I'm the guy with no hair."

He is that, all right. And it's not a fashion statement.

Wyckoff, a native of Marion who now resides in the Upper Arlington area, has alopecia areata. He is, in fact, the leader of a fledgling support group for central Ohioans who have the noncontagious, practically capricious autoimmune skin disease that causes hair to fall out.

This is generally in round patches on the scalp, but alopecia areata has a wide array of variations.

Kirk Wyckoff, for example, at the present time has a version of the disease called alopecia universalis.

That essentially means no hair, anywhere.

According to the National Alopecia Areata Foundation, based in San Rafael, Calif., approximately 1.7 percent of the population is affected by the disease, and that includes more than 4.7 million Americans.

The general term for the disease is derived from the Greek word "alopekia," meaning "loss of hair," and a Latin word that means "occurring in patches."

"Alopecia areata occurs in males and females of all ages and races," according to the foundation's Web site. "However, onset most often begins in childhood and can be psychologically devastating. Although not life-threatening, alopecia areata is most certainly life-altering, and its sudden onset, recurrent episodes and unpredictable course have a profound psychological impact on the lives of those disrupted by this disease."

Wyckoff, who came to Columbus to attend Franklin University, is a living, breathing example of exactly what the foundation is saying.

His first episode of alopecia areata occurred when he was 5 or 6 years old, but it involved only a small spot on his scalp and went away after a time.

The next onset, however, arrived with full force and in the middle of Wyckoff's adolescence during the 1980s.

"It was a pretty traumatic event for me back then," Wyckoff said.

Now manager of the information technology group for a local office of ATX Communications, based in King of Prussia, Pa., Wyckoff can vividly recall the tactics he employed to minimize the amount of time he was among his peers and a target for teasing. He would wait until the very last instant to scramble from one classroom to the next.

"It can be troublesome for teenagers in particular," he said.

It can also be especially troublesome for youngsters and for females. Canadian psychologist Wendy Thompson fit into both categories when the disease arrived in her life. In the 1996 book "Alopecia Areata: Understanding and Coping with Hair Loss," which she co-wrote with Dr. Jerry Shapiro of the University of British Columbia, Thompson describes what happened the first time she lost her hair at age 7:

"What sticks out in my memory is facing the first day of school that fall. I walked out the front door with a very skimpy scarf that didn't cover my head, got halfway down our sidewalk and turned back. My mother waved her arm slowly and firmly, as if to plant some of her inner strength in me, and said in a kind voice, 'You have to go now.' I think it was as hard for her as it was for me. In those days, more than 40 years ago, this disease was never discussed. By anyone. Ever."

Later in the introduction to her book, Thompson writes:

"Every time I was outside my Hair Loss, I was teased and stared at until I covered up the problem with a wig and created a new identity. What happened every time I was teased? I felt hurt, helpless and angry. I ate the words and they ate me."

Carrie Hart, a resident of Grandview Heights, can readily identify with Thompson's account. The native of Fremont, Ohio, has been dealing with alopecia areata from the time she was 15 years old and the bare patches first appeared on her scalp.

"It was a horrible time," said Hart, reimbursement manager for the local office of Entific Medical Systems, makers of hearing implants. "It was very difficult to deal with."

Teenage girls are insecure enough without having to deal with something like alopecia areata, Hart said.

"You're constantly trying to cover it up, asking your friends, 'Is anything showing?' " she added.

Hart, who has lived in central Ohio since 1991, is now 31 and better able to cope with her condition from an emotional standpoint.

"In the last couple of years it's gotten better," she said. "I'm older and more confident as a person, but it still hurts when people notice it.

"I can't change it and I can't control it."

Local support group leader Wyckoff, whose hair grew back after three or four years the first time it all fell out, felt tested and eventually strengthened by the teasing he experienced.

"It's just all about attitude," he said. "My philosophy on it is things could be worse.

"It's something that forged me the way I am," he said. "You can worry about your differences, but I chose to say, 'How can I use this to my advantage?'"

For instance, Wyckoff, who once again experienced complete hair loss three years ago, points to how much he saves on haircuts and razor blades.

"I don't have to shave," he said. "There are a lot of positives."

Many people with alopecia areata disguise their condition with the use of wigs, according to Wyckoff, who chooses not to do so. A major concern within the alopecia areata community, he added, is the fact many insurance companies will not pay for a hair prosthesis, even though the baldness is a direct result of a medical condition and can have dire emotional consequences.

"They way I look at it is, you can pay the wig shop owner or you can pay the psychologist," Wyckoff said.

Carrie Hart of Grandview also feels insurance companies should pay for wigs, particularly in cases of total hair loss.

"I just think that there should be something done for them," Hart said.

It's difficult to say how many people with alopecia areata live in central Ohio, but Wyckoff presumes it's just under 2 percent of the population, just like everywhere else.

Anyone interested in more information about the new support group being started in the Columbus area is invited to contact Wyckoff via e-mail.

  A sheep shamed by being sheared is sure to show people what those with alopecia areata go through, officials with a national foundation working to find a cure or treatment for the disease are hoping.

"Boundin'" -- already nominated for an Academy Award in the animated short film category -- tells the story of a happy, woolly lamb who falls into a deep funk after losing his lustrous coat.

Written and directed by Billings, Mont., native Bud Luckey, it's from those wizards at Pixar Animation Studios. This is the first Academy Award nomination for Luckey, the animator and designer of the character Woody in Pixar's breakthrough feature, "Toy Story."

Boundin' will be released nationwide as the opening cartoon to Pixar's full-length feature, "The Incredibles," about a family of super heroes who have retired to a quiet suburban life but are forced to take up their old powers to foil a diabolical plan.

The Disney/Pixar release will premiere nationwide on Nov. 5, but a benefit screening of just the opening short will be held Oct. 16 in San Francisco, with proceeds going to the National Alopecia Areata Foundation.

The nonprofit organization, based in San Rafael, Calif., is jumping on the Boundin' bandwagon because of the message the film conveys through the way in which the shamed shorn sheep once again finds happiness.

"It takes a wise jackalope, a mythical horn-adorned rabbit, to teach the forlorn lamb that, woolly or not, it's what inside that counts," according to the foundation.

Kirk A. Wyckoff of the Upper Arlington area, who has alopecia areata and is heading up a new support group for central Ohio residents with the disease, thinks the film is an ideal vehicle for promoting awareness of the condition.

"The message it's trying to portray is perfect for kids: accept yourself as you are," Wyckoff said. "It's all about self-esteem. That's an important message to get across to kids, and even to adults."