Janet Haslam on the skin disease which causes gradual loss of colour
Imagine something very personal and precious being taken away from you a little at a time. You’re not in control of when it goes and you can’t argue about the amount removed. This is the predicament faced by people with vitiligo – a common skin disease that causes areas of the body to progressively lose colour, leaving white, sunburn-vulnerable patches. The condition is indiscriminate and affects up to 4 per cent of the population worldwide.
Yet although more than half a million people in Britain suffer from it, vitiligo receives little recognition from health professionals, because it is neither painful nor infectious. Its attack on the largest organ of the body is mainly cosmetic: darker skins suffer greatly from its disfiguring signature. The depigmented areas usually affect both sides of the body in a symmetrical pattern. And as it creeps across the skin, often taking years to spread, it can be socially and psychologically devastating.
There is no outright cure but there are treatments that sometimes re-awaken dormant melanocytes – the pigment cells that tan the skin. Why they self -destruct in the first place is a mystery. It is thought to be triggered by genetic, immune and stress-related factors. No one in Maxine Whitton’s immediate family has it. She has lived with her ‘spotted calf’ appearance – the medical name comes from the Latin word vitellus, which aptly describes the patchy condition on her black skin – for more than 40 years and it covers nearly half of her body. She wears make-up on her face, but to cover her hands and arms would take hours.
She says the loss of pigment is like a ‘constant bereavement’. White patches first appeared on her knees when she was a child in Jamaica. Her face was soon affected. ‘It became a problem in my teens because I didn’t think anyone would find me attractive,’ she remembers. ‘I resigned myself to a life of celibacy.’ In fact she has been married for nearly 30 years and has two grown-up children. She has just stepped down as chair of the Vitiligo Society, a self -help group with 2,500 members. The organisation has produced the first comprehensive book on the condition, Understanding The Loss Of Skin Colour – promoted as essential reading for health professionals.
Although Whitton gives the impression of coping easily, she has been close to a nervous breakdown. ‘While it was on my face I could pretend I didn’t have it,’ she admits. ‘But when it became rampant and started on my body, I became depressed and panicky. By the time I got to my forties, I needed counseling. My self-esteem was very low, I was crying all the time.’ Nearly 50 per cent of Jane Mitchell’s white skin has succumbed to vitiligo. It’s on her face, neck, arms and legs. Even though the patches only show when she tans, she says it has had a devastating effect on her life. It started 10 years ago, when her father died. ‘I wouldn’t go swimming. I always wore a fake tan which ruined all my underwear, and I never went on holiday.’ Today she wears short sleeves. Her confidence comes from her 13-year-old-son, Lee, who inherited the complaint. Earlier this year he spoke candidly on television about the condition, which is rapidly denying him his mixed-race identity.
He says he’s not bothered by it and doesn’t camouflage the patches. ‘My school friends accept me. I had some problems with name calling, like ‘panda’ and ‘jigsaw’ but I just fought back or made a joke,’ he says. ‘It’s just hard when you go somewhere new and people stare and say horrible things about me and my mum.’ But Lee’s self-assurance was shaken last year when he took part in a year-long clinical trial at Great Ormond Street Hospital which involved rubbing a cream on the affected areas then exposing it to short bursts of ultra-violet B light. He was ‘gutted’ by the lack of improvement.
The trial follows research in Germany showing that the skin of people with vitiligo appeared to lack an enzyme called catalase. A cream containing the enzyme was tested on volunteers in London hospitals. The results of the trial will not be ready until next year, but consultant dermatologist Dr John Hawk, heading the research in London, predicts the outcome. ‘We’re very disappointed that the cream didn’t work. There are good theoretical reasons why it should. We hope to do further studies over the next six months to a year with a reformulated preparation.’ Jane Mitchell isn’t sure she wants to put Lee through the process again. Unlike Maxine Whitton, she’s never had any treatment. ‘I’ve changed my doctors four times,’ she reveals. ‘None of them seemed to appreciate that it isn’t just a cosmetic problem.’ When Dr Gina Agarwal, an academic general practitioner at Imperial College School of Medicine, recently completed an extensive survey of vitiligo sufferers, she discovered that many felt rejected and abandoned by their doctor’s indifference: ‘I found that GPs were not really addressing the psychological problems, and had not offered any treatment to the sufferers. If the GP had offered treatment, perhaps patients wouldn’t have been so depressed or isolated.’
Treatments available on the NHS: n Steroid creams applied aggressively to the affected areas can sometimes halt the condition.
PUVA ( Psoralen + UVA) Patients given the drug psoralen, which makes the skin sensitive to light, are then exposed to ultra-violet A light to encourage the natural colour to return.
Other remedies: Special creams can help to disguise the patches. The Red Cross offers a free cosmetic camouflage advice service. Many of the cosmetics are available on prescription.
The Vitiligo Society is at 19 Fitzroy Square, London W1T 5HQ.
I found this article here: http://www.pathology.ufl.edu/~mccormac./VIT-INFO.html#hk Though The Guardian is referenced as the source, I could not find the original article on their site.