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Trichotillomania - Women Who Tear Out Their Hair

Wednesday, February 25th, 2009 Trichotillomania - Women Who Tear Out Their Hair

One of the complexities of this condition it that there is little understanding in relation to this affliction that drives sufferers to a life of misery, secrecy and shame. Most are good-looking, intelligent young women.

An article in the Times (22 02 09) by Jemima Khan tries to evaluate the truth about the disorder trichotillomania.

Khan gets descriptive directly when she states, “Robina started pulling out her hair when she was 11; she can remember the exact day she started, on a Sunday afternoon sitting in the armchair in the living room at home. By the age of 12 she was bald. Her father took her to the doctor and told him: “She plucks her head like a chicken.” The doctor could provide no explanation. For the next 27 years she spent her time “wearing hats and hiding”. Her boyfriend of over a decade is unaware that her baldness is self-inflicted, one hair at a time.”

Robina suffers from trichotillomania, a little-known and less understood disease. It is characterised by an uncontrollable urge to pluck out the hair, usually from the scalp but also sometimes the eyebrows, eyelashes, body hair or pubic hair, often to the point of baldness. It is thought to affect as many as one million women in Britain today, or, according to other estimates, between 2 and 4% of the general population.

Surprisingly, the figures match other conditions such as anorexia, panic attacks and bulimia. But most people have never heard of trichotillomania. Furthermore, most GP’s are also limited in their knowledge of the condition. Worryingly, is the fact that every GP is likely to have at least 10 trichotillomania patients in a typical list of 1,000.

Most school teachers equally have a very limited knowledge of the condition, despite the fact that 100% of them will at some point have a child with the condition in their classroom.

Lucinda Ellery is the UK’s leading expert on trichotillomania. Ellery has famous clients. Her best friend, Barbara Windsor, is having her hair primped in the salon. Kylie, Girls Aloud, Liberty X and the Sugababes have all visited for hair extensions. But most of her clients suffer from some kind of baldness as a result of chemotherapy, surgery, wounds or female-pattern hair loss. And then there are Ellery’s ‘trich girls”. “We have more trichos under one roof than anywhere else in the world.’

Ellery understands only to well the agony of hair loss for at the age of nine her father suddenly died. She was sent to a convent in South Wales. What was beautiful thick blond hair was soon to be lost, almost overnight. Her head was eventually shaved. She went on to buy her first wig
at the tender age of fifteen years. From there on in ‘I wore them 24 hours a day, and I don’t think I got a decent night’s sleep for 20 years.’

Never slow to miss an opportunity Ellery found a niche in the market, she devised the indestructible “volumiser”, which has now been replicated in other salons. A fine mesh cap is fixed across the damaged areas of the scalp, through which the remaining hair is pulled and extensions attached. It is virtually impossible to get at the new hair growing underneath. “It’s a bit like wiring the jaws for overeating,” says Ellery. It’s extreme and it takes a whole day to apply, but it works, especially if combined with regular counselling and support groups. Once a volumiser is in place, you can swim, shower and sleep in it.

Her clinic according to Khan is that of a discreet townhouse
on Chiswick High Street, west London. A bright reception leads into a cavernous back room which is full.

Robina, 39, a customer-care manager and mother of four, is having her volumiser adjusted. You’d never guess that beneath the shiny brown hair she looks, she says, ‘like a monk — totally bald on top, long at the sides’. She’s exceptionally pretty, but when I ask if she’s ever been a model she looks aghast. ‘That’s not what I see when I look in the mirror.’

After 27 years of pulling out her hair she read about Lucinda’s clinic, and after six months she summoned the courage to make an appointment. Her new head of hair changed her life instantly. “My brother, who was waiting in the reception, didn’t recognise me. On the way home a man held a door open for me for the first time in my life.” She believes her hair-pulling was induced by the stress of her father’s volatility and violence. “I would lock myself away in the bathroom and pull my hair out until the early hours of the morning. If that’s not a child in trauma, I don’t know what is.”

Trichotillomania is not a new disease, but there is still great uncertainty as to what causes it. First described over 100 years ago, the syndrome was given its name — derived from the Greek words thrix (hair), tillein (to pluck) and mania (frenzy) — by a French dermatologist who noticed the compulsion in many of his patients. Ellery prefers the “less offensive” terms “tricho” and TTM, which don’t imply madness. She says 99% of the women she sees have no other pre-existing psychological or body-related issues. Research carried out by the Trichotillomania Learning Center in California in 2000 found that sufferers were “as psychologically healthy as the rest of the population”.

The condition affects people from all backgrounds. Ellery shows me images of women on her computer screen. There’s an MP, a doctor, a judge, a barrister, a journalist, a policewoman, a model, a psychotherapist, a tycoon’s wife, a hairdresser, a schoolgirl, a housewife, faces obscured, heads bowed in what looks like shame. All are almost entirely bald.

It is understood that trichotillomania almost always starts at puberty and predominantly affects women. Classified as an impulse control disorder, it is thought to be triggered by anxiety. Some studies suggest a genetic link, others that it’s a neurobiological disorder. On MRI scans it looks similar to Tourette syndrome, which is usually a motor disorder. Others claim it’s an atavistic grooming instinct gone wrong.

Furthermore the act of pulling is usually ritualised. Women describe the actual process of finding the right hair. Crucially, something is done with the hair afterwards ie chewed, wrapped round the tongue, pulled through the teeth, bitten into pieces or even ingested. Fewer than a quarter of the people who pull their hair discard it quickly. ‘For me, it’s usually the kinky hairs on my head which are slightly thicker or a different texture to the rest,” says “A”. “Those absolutely must go. Or if my head is sore in places, I’ll pull around the sensitive areas. I know it sounds perverse, but the more painful it is, the more gratification I get.’

Secrecy and shame are an intrinsic part of the sufferer’s life. Robina has only spoken to the clinic and blood relations about her condition, but agreed to talk to me because she hopes it will encourage others to find help. An article about trichotillomania changed her life after 30 years of suffering. “I didn’t even know help was available,” she says. “Life’s too short to be unhappy for so long.” She blames the breakdown of her marriage on the constant need for secrecy and the mood swings resulting from her varying degrees of baldness. She still tells people her hair loss is alopecia (ie, not self-inflicted).

Additionally as derscribed by Dr Sarah Brewer, who co-wrote The Quantum Follicle: says ‘her attitude is not unusual.’ The Sexuality and Psychology of Hair, explains: ‘Part of the reason that it is so under-reported is simply because so few people with the condition talk about it. Even when they do reach out, many will present their symptoms as alopecia.’

O ne of Manjit’s clients could admit that she had been raped and had problems with alcohol but not that she pulled out her hair. Dr John Gray, a GP and member of the Oxford Hair Foundation who runs a trichology clinic in Surrey, says: “I have a strong feeling that those we know about may be the tip of the iceberg. The real number could be far in excess of the official figures.”

Finally, Ellery has come across several women who have hidden their baldness from partners for decades.

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