At 12, Jennifer Smith felt very much alone. Not that adolescence is an easy time for anyone, but the Chicago youth had a most peculiar problem. She was developing a beard, a mustache and sideburns. By the time she was 21, her hair growth had spread, covering her whole body-her back, stomach and chest. For Jennifer Smith, the agony of hirsutism had begun.
None of the other women she knew had excessive hair growth. It wasn’t a family trait. Worse yet, no one seemed to understand her problem. She was taunted and teased by men and women of all ages, so much so that at one point she began to wonder if some of her cruel tormentors were right. Was she, in fact, half-woman, half-man?
Desperately, Smith sought ways to remove the hair. She tried shaving, tweezing, waxing, depilatories, electrolysis and even a method she accidentally discovered while cooking.
“I’d turn the burner of my gas stove up on high and singe the hair off. The flame would be just high enough that I wouldn’t burn myself,” said Smith, who performed the ritual every two or three weeks to control the mass of long, dark, coarse hairs growing on her arms.
She also sought medical attention. “I started going to the doctor when I was about 18. I was gaining weight,” she said. “He did blood work on me and found that I had high levels of testosterone.”
But it wasn’t until she was in her late 20s “that I understood what was going on,” said Smith, who had been diagnosed with polycystic ovary syndrome, a disorder in which the ovaries overproduce male hormones and ovulation does not occur. Smith found through persistent effort that hirsutism (or excessive hair growth in areas of the body sensitive to the male hormone), in addition to obesity, irregular menstrual cycles and infertility, is a symptom of the syndrome.
Her discovery prompted her to find other hirsute women through state-sponsored referral organizations. “I didn’t have any support from my family or friends, so I decided to create my own environment of support,” said Smith, who in 1988 founded the Chicago-based Daughters of Hirsutism Association, the first support group for hirsute women.
“Three years ago, you couldn’t even find the word `hirsutism’ in some dictionaries. I call this one of the last, best-kept secrets. You can read about homosexuality, infertility and menopause, but hirsutism is something you’ll only find written about in medical journals. The media doesn’t want to write about it. Even when a talk show displays interest, they want to make it out like a freak show.”
As Smith is quick to point out, however, hirsute women are far from freaks. “One of the missions of the organization is to educate the public and let it know the reason we have this problem,” she said. “We are not freaks or transsexuals. We are human beings who love. We are students, attorneys, chemists, all kinds of women, and we’re very productive in society.”
The group also strives to reach and educate other hirsute women to combat the loneliness that often accompanies the problem. “Many of the women feel they are all alone,” Smith said. “Two weeks ago, I talked to a lady in Virginia and she told me that she felt like she was the only woman in the state with hirsutism. I told her, `No, you’re not.’ “
An unwelcome inheritance
An estimated 5 percent of the American female population suffers from hirsutism, said Dr. Randall Barnes, chief of reproductive endocrinology and infertility at the University of Chicago. Barnes, who has been studying hirsutism and the conditions that cause it since 1983, noted that while excess production of male hormone and the skin’s sensitivity to those hormones are the reasons for hirsutism, heredity indicates which women are most prone to it.
“Women from a northern European background tend to have less hirsutism, while women from a Mediterranean background tend to have more. Black women have problems with hirsutism. But Orientals rarely, if ever, have hirsutism because they just don’t have very many hair follicles,” Barnes said.
Women’s hair follicles usually produce facial hair that’s short, thin and without pigment, he said. When hirsutism develops, the follicle produces the kind of hair men usually have: longer, thicker and darker.
Signs of hirsutism usually surface during puberty, but the problem can appear in girls as young as 8, Barnes said. Among the 1,200 Daughters of Hirsutism members, who live throughout North America, ages range from 18 to 76.
Excessive hair growth may be an indicator of other maladies. “It can be a sign of serious underlying disease, so if somebody has hirsutism, it needs to be evaluated hormonally,” said Dr. Andrea Dunaif, professor of medicine and head of the diabetes and metabolism section at Pennsylvania State University College of Medicine in Hershey, Pa.
Women diagnosed with the most common cause of hirsutism, polycystic ovary syndrome (also known as Stein-Leventhal syndrome, after Drs. Irving Stein and Michael Leventhal of Michael Reese Hospital in Chicago, who first described it in 1935), have been found to have a decreased sensitivity to insulin and “that condition predisposes you to getting diabetes,” explained Dunaif, who has treated hirsute women for 12 years.
Hirsutism may also signal such potential problems as infertility or uterine cancer. Alopecia, or loss of scalp hair, can also result. “Male hormone can make scalp hair disappear, whereas it makes facial hair develop,” Barnes said.
Cosmetic solutions
Not every doctor is sympathetic to the plight of those with hirsutism. “The doctors that I’ve seen just throw their hands up and say, `Oh gee, looks like you’ve got some hair,’ ” said Janet Beeching, 41, a military homemaker from Homestead, Fla., and a member of Daughters of Hirsutism.
Beeching, who has seen numerous military doctors since her hirsutism first became rampant 20 years ago, wasn’t allowed to see her medical records until recently. “You’d go to the doctor, he’d write things down, and they’d keep your medical records like it was a secret,” she said. “Now since the hurricane has hit, they’ve released the records back to us. I was looking through the past five years and I saw Stein-Leventhal syndrome was mentioned. . . . No one told me a thing.”
Beeching, like other hirsute women, has turned to one of the many cosmetic methods of hair removal. “Me and my razor have become very good friends. I shave twice a day-mornings and afternoons. If I don’t, I’ll have a 5 o’clock shadow,” she said.
Others, like Nanci Mann, 21, a nursing assistant in Tacoma, Wash., resort to a variety of techniques, none of which has proven satisfactory. “I bleach my mustache every two days, but now that it’s getting really thick, the bleach doesn’t cover it,” said Mann, who burned her upper lip from the process nine months ago and is still healing.
“I can’t wear a skirt either,” she says. “By the time I shave my legs in the shower and get out, it’s time to shave again. There’s so much hair I can’t cover it up with nylons. I cry about it all the time.”
While hirsutism is not curable, it is treatable with a variety of medications depending on the cause of hair growth.
Electrolysis is the only cosmetic treatment that permanently prevents hair growth. But the process is costly and time-consuming because only a small area can be covered during each treatment, and it is often considered painful. (Teresa Petricca, president of the American Electrology Association, based in Trumbull, Conn., cautions that because Illinois is one of 22 states that don’t license electrologists, consumers should look for one certified by one of several electrology associations. Otherwise, she said, you could suffer “scarring, passing infections, contagious skin conditions or blood-borne diseases such as the HIV virus or hepatitis” because of improper procedures.)
Not just physical
Despite the dangers and discomfort connected with hirsutism, the most difficult aspect of it is dealing with it psychologically, Smith said. “The physical you can talk about. You can say this is what I have. But it’s very painful to talk about it psychologically,” she said. “You have to get deep down within the soul, and many of the victims of hirsutism have locked away the pain.”
Smith, who said she receives an average of 25 letters a week and phone calls from throughout the country, many of which are suicidal, relies on a board of advisers and guest speakers in fields such as endocrinology, dermatology and psychology to assist her and provide information at monthly support group meetings. For hirsute women outside the Chicago area, Smith networks through a newsletter and is organizing Daughters of Hirsutism chapters in Indiana, Virginia and Florida.
Coping with hirsutism is a daily problem. “It bothers me a lot more than I let on,” Beeching said. “I don’t spend a lot of time looking in the mirror or putting on makeup. I’ll shave when I’m in the shower so I don’t have to look at my face while I’m doing it. It’s very hard to feel feminine with a chin full of whiskers.”
Dating and intimacy are other issues hirsute women must confront. “I haven’t dated a guy in two years,” Mann said. “It’s like I tell my friends, you have to break them into it. You have to find someone when you don’t have any (facial) hair that day. Then slowly, let it go a little bit to see how he’s going to react.”
Work can be equally difficult. “I’ve quit a couple of jobs because I’ve been known as the lesbian,” Mann said. “I had a short haircut and I had facial hair, so I was really harassed.”
Said Ree, a Chicago secretary who asked that her last name be withheld: “I keep hoping that society will change. We tell women, `You don’t want gray hair, use this. You want whiter teeth, use this.’ There are things that we can control and there are things that we can’t.
“We come here to talk, share, cry, laugh, and sometimes I think: `Oh my God, I’ve got to hear this stuff again. I really don’t want to,’ ” Ree said at a recent support group meeting in Chicago. “But something ultimately strikes and I realize I can’t act like that. Some people are here for the first time. I may have been here umpteen years, but they haven’t been. I’ve got to be a support mechanism to help them weather their storms.”
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For more information, contact the Daughters of Hirsutism at 203 N. LaSalle St., Suite 2100, Chicago, Ill. 60601, or call 312-558-1365.
