Alopecia: 'It's like losing a part of yourself'

Alopecia isn't life-threatening; it's not even painful. But the anguish and the shame of losing their hair causes most victims to suffer in silence, writes Hester Lacey

When Dr Nigel Hunt's best friend died in a car crash in 1990, he suffered terrible distress. As a result, within six months he had lost all his hair. His confidence was dented and his marriage shattered; his then wife couldn't come to terms with his condition, and refused to touch his head or even look at him.

When Dr Nigel Hunt's best friend died in a car crash in 1990, he suffered terrible distress. As a result, within six months he had lost all his hair. His confidence was dented and his marriage shattered; his then wife couldn't come to terms with his condition, and refused to touch his head or even look at him.

Alopecia universalis is a severe condition that means not only the loss of the hair on the head, but also the eyebrows, eyelashes - and everything else. When alopecia strikes, no one can say if the lost hair will regrow or not. Dr Hunt never got his hair back - or not much of it, at any rate. "I have little fluffy bits, maybe more in summer if I go somewhere hot," he says. "But from a distance of 10ft, you would think I had no hair." Alopecia is very different from the normal, gradual onset of male baldness.

This sudden, unexpected hair loss can affect anyone, including women and children. Alopecia areata, the most common type, involves losing head hair in patches. Alopecia totalis is the loss of all head hair. And alopecia universalis is the loss of all hair from every part of the body. Alopecia isn't life-threatening or even painful, but it is extremely distressing. "Hair is crucial to identity," says Dr Hunt. "Losing all one's hair is akin to a severe facial disfigurement in the way it changes your appearance."

Dr Hunt, now 41, is a senior lecturer in psychology at Nottingham Trent University, and specialises in the impact of traumatic events. He is no stranger to the workings of alopecia triggered by trauma, but it was some years into his own experience before he thought of trying to research the condition in detail. He and his second wife, Dr Sue McHale, 51, a senior lecturer in psychology at Sheffield Hallam University and a specialist in stress, have now written a book on the subject.

Alopecia is surprisingly common. Estimates vary at between 0.1 per cent and 1 per cent of the population having alopecia at any one time. But because many people suffer in silence, it remains an elusive complaint. "We found lots of people with alopecia, but no one speaks of it," says Dr Hunt. Almost no public figures have admitted to the condition, an exception being Duncan Goodhew, the Olympic swimmer, who lost all his hair following an childhood accident. The reason for this reticence is largely embarrassment, says Dr McHale. "People are ashamed and find it difficult to come to terms with becoming a different person. That stops them talking openly, especially women." Hair, she says, is a powerful symbol of virility, sexual power and attractiveness for both sexes. "In one of our studies, one woman said: 'If you've lost your hair, you've lost your crowning glory.' This isn't about vanity, it goes much further than that."

The causes of alopecia are hard to pin down. Sometimes it is associated with childbirth, or with medical treatments such as chemotherapy. But often there is no obvious reason. Elizabeth Steel was in her early thirties, working as a television journalist, when her thick, dark hair began to fall out. She was devastated, the more so when doctors told her that there is no guaranteed cure. Elizabeth lost 90 per cent of her hair. "From the front I looked completely bald," she recalls. "I thought my husband would never look at me again and that I'd never work again. I was terribly ashamed and didn't want anyone to know. I would wear a wig to bed and sneak to the bathroom to take it off when my husband was asleep."

Elizabeth found that there was no support network for alopecia patients, so she started Hairline International, a self-help group for women. When she bravely went public about her own condition, she was inundated with letters from other sufferers. "I did an interview saying I felt like a freak and I got letters from all over the world," she says. "Meeting other women with the same condition was great."

After eight years, Elizabeth's hair began to return, as mysteriously as it had vanished. The uncertainty is particularly hard to deal with, she says. "No one can tell you if or when your hair will come back. And many doctors aren't very helpful because this isn't a life-threatening condition and there's not a lot they can do. But while it's not life-threatening, it certainly destroys lives."

Hairline International's research has shown that 40 per cent of their women members have experienced problems in their relationships, and many have even split up with their partners. Careers suffer, too: 63 per cent reported work-related problems. Worst of all, says Steel, 60 per cent have seriously considered suicide. Alopecia is distressing for men, too. Although Hairline was originally set up for women, men began to come forward as well. "We have men in their teens writing to us," says Steel. "I had such a sad letter from one, saying he thought he would never get a girlfriend or a wife."

Hairline International has now been supporting alopecia patients for 15 years, and Steel will receive the MBE next month for services to health. She has recently noted an increase in younger women contacting the organisation. "Stress can play a big part in alopecia areata, but there is also a link between hair loss and the synthetic hormones found in some varieties of the pill. Crash dieting and eating disorders such as bulimia and anorexia can also cause thinning hair, as can low levels of iron in the blood. We ask everyone who contacts us to fill in a questionnaire, and poor diet often comes up. One of the main tips we pass on is to improve eating habits."

Charlotte Williams, 35, has never discovered why she lost her waist-length blonde hair a little over a year ago. "It began with a persistent patch of scaly skin, which I had had for some months and took to be a fungal infection. That patch became bald, then within days the rest had gone." Williams was distraught. "It's like losing part of yourself. Everything I read about it said there was no way of knowing when the hair would grow back." Too ashamed to tell anyone other than close friends and family, she treated herself to the best wig she could afford and decided to make the best of it. "The only other people I knew who'd lost their hair had cancer," she says, "so I told myself to think myself lucky and deal with it." She was lucky, as it turned out, and her hair began to grow back almost immediately - but not before she'd been to see a trichologist who offered to cure her condition completely by selling her a clutch of expensive "natural" products. "Luckily, I wasn't that desperate. I hate to think how people could be fleeced when they're at their most vulnerable," says Williams.

The lack of an effective remedy for alopecia is yet another distressing aspect of the complaint, although prescription drugs such as Minoxidil and Propecia can help in some cases. "GPs find it very difficult to help patients when there is no cure they can offer, and dermatologists tend to regard the condition as mild, although to the lay person it is devastating," says Dr McHale. "The treatments for alopecia are not particularly effective," agrees Dr Hunt. "We have spoken to a lot of people who are in despair because they have tried everything, from steroid creams and injections, to rubbing various concoctions on their heads and taking alternative remedies such as homeopathic treatments." The desperate are an easy target for quacks, warns Dr McHale. "So many alopecia patients have spent loads of money searching for a miracle cure," she warns. "No such cure exists and a lot of money is being made out of the suffering of individuals."

The strategies recommended in their book, Coping with Alopecia, centre around accepting that, while there may not be a quick fix, it is possible to live with the condition. "If there is a problem, you can't always have a cure," says Dr Hunt. "And the more severe the alopecia, the less likely it is to get better. It really is a matter of coming to terms with it - of treating alopecia like any other stressful or traumatic situation and learning to adapt. Some people do it naturally, but others hide themselves away in their homes and never go out. They think they can't see their family or friends or go to work, but the vital thing is to realise that they can do all those things, just as they did before."

One of the keys for him, he says, was realising that people were not going to laugh at him or make fun of him. "People don't react as you think they might," he says. "My alopecia is there, I've recognised it, and it can't dominate my life."

'Coping with Alopecia' by Nigel Hunt and Sue McHale, Sheldon Press, £7.99.

Hairline International, www.hairlineinternational.com.

'The Hair Loss Cure' by Elizabeth Steel (HarperCollins) is out of print but can be found on www.amazon.co.uk