A New Acceptance

If you think it’s tough being a bald man, try being a bald woman.

“Hair is a big part of femininity; all the messages out there tell women that you’re not a woman if you don’t have long, gorgeous hair,” Cari Bickley says. “Every man is concerned about losing his hair, but it’s still much more socially acceptable for men to be bald or balding. If you’re a woman--or a child--you’re just ‘weird.’ ”

Bickley knows this only too well.

Her hair started falling out in 1980, when she was 18. By 1989, after she had given birth to her third child, all her hair was gone--not just on her head, but all over her body.

She is one of an estimated 2.5 million Americans--men, women and children--who have a baffling condition known as alopecia areata.

And she is one of nearly 20 million American women who, for a variety of medical reasons, including chemotherapy treatment, have lost or are losing their hair.

Bickley, 36, who lives in Spokane, Wash., with her husband, Rick, and their children, was the 1997 Mrs. Washington International and made the Top 10 in the August competition for the Mrs. International title. She wore a wig during the pageant, but only because she didn’t want her baldness to be a distraction to the judges. In competitions in 1994 and 1995, she appeared both with and without her wig.

A former dancer and dance instructor who has traveled the nation speaking out about alopecia, Bickley is trying to support others who have difficulty accepting the condition.

“It is a question of self-esteem,” she says. “There are a lot of people out there who are hiding and feel bad about themselves. They are not comfortable with how they look and don’t go anywhere.”

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The cause of alopecia areata is not yet clearly known, although most researchers believe it is an autoimmune condition--that is, a process by which the body’s immune system responds to some stimulus by attacking itself. Allergies and certain types of joint disorders are examples of some of the more commonly occurring autoimmune diseases.

Recently, however, scientists discovered a gene that might be responsible. The Jan. 30 issue of the journal Science reported that researchers found a gene they called “hairless” in studying a Pakistani family plagued for generations by alopecia. Researchers determined that a gene in the region of Chromosome 8 contained a single mutation that was not present in those family members who were unafflicted. The work is preliminary and needs to be expanded, researchers say, but raises the possibility of gene therapy approaches.

Hair loss is especially frustrating for women because of the dearth of products and treatments available to help them. Short of wearing wigs and other cover-ups, there’s not much they can do.

Rogaine (topical minoxidil) and hair transplantation are among the few options both men and women with pattern baldness--a thinning of hair on the top and sides of the head--can try. But they don’t always work. And they do nothing for those who have lost all of their hair.

The latest treatment to fight baldness--Propecia, the first pill for hair loss--won’t help anyone who is totally bald. It is for those who suffer from pattern baldness--more specifically, it is for men who suffer from pattern baldness. It has not been approved for women.

It is known that Propecia can cause birth defects, but has yet to be tested on post-menopausal women or those for whom reproduction is not an issue.

“You have to treat different causes of hair loss differently, but it is nevertheless true that drug companies go where the market is--which is mainly male pattern baldness,” says Fred Wahl, a spokesman for the National Alopecia Areata Foundation, a national education and support group based in San Rafael, Calif.

The foundation is one of the few sources of research dollars for scientists exploring this problem. Yet the funds are very small: The group awarded 10 grants totaling $169,000 for its 1997-98 research program, a paltry figure compared with the millions routinely targeted for more high-profile ailments.

The federal government--specifically the National Institutes of Health--is the major source of funding for the nation’s researchers. The National Institute of Arthritis and Musculoskeletal and Skin Disease, a part of NIH, sponsors research on conditions related to hair loss within its dermatology programs. For specific research into alopecia, the institute awarded $475,000 in 1997.

“Alopecia is not life-threatening,” Bickley says. “Researchers are concentrating on other diseases; they would rather spend their research money on diseases that take lives. Nevertheless, the investment in research might bring much information in the understanding of autoimmune disorders.”

NIH regards the problem as significant, and officials there say they would be eager to support work in this area if scientists would submit grant proposals. But there doesn’t seem to be widespread interest within the research community, one official said.

“We are clearly interested in funding it,” says the official, who requested anonymity.

To that end, NIH plans to sponsor a workshop on alopecia in November with the hope of inspiring more researchers to become involved. “Usually, having a workshop does put a greater focus on a particular topic, and often grant proposals do result,” the official says.

There are some experimental treatments underway, using topical immunotherapy products, but many have unpleasant side effects or are very inconvenient to use.

Bickley had some success with a process known as photo chemotherapy, which involves the use of a drug in conjunction with exposure to a light that activates the drug internally. But she developed some pigment loss in her skin and also found the process impractical.

“I came close to getting a full head of hair back, but it involves treatments three times a week for the rest of your life,” she recalls. “And on the days of the treatment, you can’t go outside and you have to wear special glasses--and I just did not want to be tied to a treatment like that for the rest of my life.”

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Alopecia takes different forms. The most common is patchy alopecia areata, which appears as small, smooth, circular areas of hair loss. The others are alopecia totalis--complete loss of scalp hair--and alopecia universalis, which is the complete loss of all body hair. Heredity is believed to play a role in about 20% of cases.

Androgenetic alopecia is commonly known as female pattern hair loss. Hair loss can be triggered by, or exacerbated by, a range of factors, among them: medications, hormones, childbirth, and physical or emotional stress.

Understandably, most women are reluctant to be very public about their condition. Many don’t want to talk about it. Others make jokes. (“I never have a bad hair day,” says one woman who is completely bald. “Mine are always no hair days.” That same woman, however, has commented to family: “I realize this is not life-threatening--but it would be nice to have hair” and swears that if she begins losing her eyebrows too, “I will never leave my house.”)

Bickley says she felt this way for a long time too. There was a time when she would never remove her wig. But one day, eight years ago while teaching a dance class, she began to worry that her wig would fly off. At that moment, she decided she’d had enough.

The next day she showed up to teach wearing a baseball cap. And soon that too came off.

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Bickley began showing signs of the disease as a teenager. The night of her senior prom, she found herself penciling in her eyebrows. “I thought I’d gone overboard with the plucking,” she says.

Following graduation, she went to Reno to dance as an MGM showgirl and one night noticed a large bald spot at the front of her head.

“We had to wear these very large, very heavy headpieces, and I thought they had been pulling my hair out,” she says. “But my mom took one look at me and said, ‘That’s not normal.’ ”

She saw a dermatologist, who diagnosed alopecia and began treating her with cortisone injections at each hair loss site. This worked for about 10 years, helping the hair to grow back. But success was temporary.

The problem worsened after the birth of each of her children: Danielle, 13, Kyle, 11, and Nick, 8. Finally, in 1989, six months after Nick’s birth, all her hair was gone. She credits her children and husband with enabling her to “come out of hiding” and feel good about herself.

“If I didn’t have this support, I couldn’t have done it,” she says. “Without it, it would have been a whole different story. Rick has never made me feel any less feminine, any less attractive, any less desirable.”

Most of the time now, “I leave the wigs at home,” she says. “When I dress up, when I go to church, for example, I wear a wig because it is appropriate. But when I’m around home and my friends in general, doing less dressy things, I wear a baseball cap, or go bald.”

But, she stresses: “It took me seven years to get to that point, to feel comfortable enough to do that. This isn’t something that came overnight. One of the things I say in my speeches about this is that it is important for people to allow themselves the time that they need to be comfortable with it.

“People expect that ‘she’s OK with it, so I should be OK with it.’ But . . . they have to give themselves time.”