An incorrect telephone number was listed for the local alopecia areata support group in yesterday's Health section. The correct evening number is 281-3616. The telephone number for the Montpelier Cultural Arts Center, which was listed incorrectly in yesterday's Arts Beat column, is 953-1993.
No one," wrote the founder of the National Alopecia Areata Foundation, a national support group for this baldness disorder, "falls in love with you to be close to your hair."
"If we believed TV commercials," wrote Ashely Siegel of Mill Valley, Calif., "in order to be sexy and interesting we'd have to have long, thick, golden locks and a big blow dryer in our hip pockets."
Helping people with alopecia get over that particular hang-up was one of the reasons the national group was founded. And in recent months, more and more victims of this disorder, which causes hair to fall out and often stay out, are tossing their wigs (sometimes figuratively, sometimes not) into the air, and are going public. Some choose to go publicly bald -- lecturing, interviewing, appearing with no wigs -- as well. As a result, support groups are springing up all over the country, and research into possible remedies is being intensified.
Scientists don't know exactly why people get alopecia areata, but there is strong evidence suggesting that it is an autoimmune disorder in which, for unknown reasons, the immune system's T-helper cells, a type of white blood cell, somehow attack hair follicles as if they were invading enemies.
Some researchers have suggested stress or environmental toxins plus a genetic predisposition may combine to cause the disorder. People with Down's syndrome appear to be particularly vulnerable to it, for example.
There are an estimated 2 million Americans -- at least -- suffering from alopecia areata in one of its forms. Dermatologists have identified several classifications of the disorder ranging from the "limited" type, in which patients tend to develop small bald patches here and there up to about 50 percent involvement, to the more serious "totalis," in which all the hair on the scalp disappears, and finally "universalis," in which all hair, including eyelashes, eyebrows and body hair of all kinds, simply disappears. Sometimes the hair grows back spontaneously, only to fall out again. Sometimes it is just gone.
"I just got up one morning," recalls 36-year-old William (Pepper) Hunter, "and was shampooing my hair and these big globs of hair kept coming out. It was freak city. It freaked me right out. Then one day I looked in the mirror and my eyelashes weren't there. And the next thing I knew I only had half a mustache and no eyebrows."
Some four years later, Hunter has lots of hair, and if he doesn't shave daily, he quickly sprouts a thick beard. He is a happy man.
He is also a product of a new still-experimental treatment for alopecia. One that is not 100 percent effective and one that carries some risks, notably of skin cancer, but a treatment that has worked well for him, one he will gladly repeat if he starts to lose his currently thick head (and face and chest) of hair.
The treatment is called PUVA, a combination of a drug (psoralen) that heightens sensitivity to ultraviolet-A rays, and a bank of lights that give off these UVA rays. The lights are enclosed in a sauna shed-like structure called a PUVA box. The procedure is approved for use in psoriasis, the disfiguring skin condition from which PUVA has removed the legendary "heartbreak" appellation for thousands of sufferers. But its use in alopecia is still considered unproven, and it is controversial even among the victims of the disorder.
Experts believe PUVA works by stimulating T-suppressor cells, a type of white blood cell that shuts down the T-helper cells that promote the immune system's attack on hair follicles. That has yet to be proven.
Dr. Moses Albert, a Washington dermatologist, has opened an office at Greater Southeast Community Hospital, where he is treating several alopecia patients with PUVA.
He cites reports that about two thirds of alopecia patients will respond to PUVA treatments. Of his own small group of patients, Hunter is his most exemplary success.
Albert is the medical adviser to the D.C., Maryland and Virginia Support Group of the National Alopecia Areata Foundation, and he recognizes that there is "a reluctance among some patients to try this. Many are just beginning to feel they can cope with their condition, and they are happy with that."
Albert adds that he does not believe the treatments are particularly disruptive, but they do require office visits, and for the next 24 hours, because of the sun sensitivity, patients must wear very dark, thick sunglasses (even over their own glasses) and must shun the sun. Hunter, who is a part-time actor in mostly amateur theatricals, enthusiastically agrees that the hair justifies the risks and that the incovenience is minor.
A leader of the local alopecia areata support group, who does not want her name used, is not so sure. She has worked hard to make herself and her fellow patients more comfortable with themselves and with other people -- to cope, at least, if not to go completely public.
She herself has a new Australian-made hairpiece about which she is "ecstatic. I have my own hair now, I just got it in a different way."
She has had alopecia areata since 1978 but in retrospect realizes she had had bouts all through her childhood.
"I think," she says, "those of us in the group really had to reinvent the wheel before we found each other . . . When you are trying to keep it a secret, you devote so much energy to keeping the secret, you lose so much . . . It is such a waste." Most of her friends and her family's friends are aware of her disorder, which she no longer considers a problem -- for the most part.
Support group meetings deal with new treatments, of course, but they are especially helpful in disseminating information not only to other patients, but also to physicians.
Probably most important, support groups can restore self-confidence to sufferers who almost inevitably go through periods -- sometimes years long -- of feeling like freaks, grieving for lost looks. Cosmetic and wig-wearing counseling can be literally life-saving.
Curiously, more women than men show up at support group meetings, although the disorder strikes both sexes (and all races) with even-handed ferocity. It may be because there is more societal acceptance of baldness in men, some have speculated. Hunter's experience, however, demonstrates that although reaction to the problem may be different for men, it is still not easy.
"People thought I had just decided to shave my head," says Hunter. "They assume you are either being very militant or very weird. They didn't notice there were no eyebrows. They didn't notice that there was no facial hair. It was just, 'Oh you shaved your head. How weird.' "
Hunter's hair is thicker and straighter than before -- probably, says Albert, because the regenerated follicles lose their original curl. And Hunter is, he says, acutely aware of others who might have the same problem. "I saw a guy at Tower Records the other day," he says, "and I could see he had it. I just went up to him and asked him what he was doing about it. 'Nothing,' he said. So I told him about Dr. Albert, and he said he'd get in touch."