Vitiligo causes white patches to appear on the skin and affects one in 100 people, but the condition can be helped. Barbara Lantin reports
From her twenties onwards, Maxine Whitton became so used to being stared at wherever she went that she developed various strategies to deal with strangers. To small children who pointed, horrified, at the white patches on her chocolate brown skin, she would smile encouragingly and suggest that they touch her to reassure themselves.
When an American man crossed a room shouting: “Hey, lady, what is this?” as he grabbed her arm in front of 50 others, she lapsed into scientific language, explaining that in the skin condition vitiligo, epidermal melanocytes (pigment-producing skin cells) stop functioning, causing white shapes to appear.
“People are frightened by vitiligo,” says Whitton, 64, a retired academic librarian and French teacher from east London and former chairman of the Vitiligo Society. “They are not being nasty, but they feel they have the right to intrude. If they don’t have the courage to ask you what is wrong, they just stare. They look at you as if you are a leper. Sometimes, you sense them recoil when they accidentally touch you.”
Not surprisingly, Whitton, who lost about 60 per cent of her body colour to vitiligo and “looked like a panda”, began to cover up. “I had nothing in my wardrobe with short sleeves – even my summer clothes. We stopped going on beach holidays, even though I love the sea. I never went anywhere without my make-up, which took about 20 minutes to apply. If somebody came to the front door before I had put it on, I wouldn’t open it.”
For many years, people with vitiligo were told that no help was available other than camouflage make-up, and although many sufferers and some GPs still believe this, it is no longer the case. Repigmentation is possible, as Whitton has proved.
Although most noticeable in people with dark skin, vitiligo affects one person in 100, across all racial, ethnic and national groups. The world’s best-known sufferer is said to be Michael Jackson, who claims he lost so much of his skin colour that he had the rest depigmented to match. About 40 per cent of those affected have a relative with the condition, but factors other than genetics, such as stress, hormonal fluctuations, injury and chemicals, also play a part.
The average age of onset is around 20, though it can start at any time and often appears in childhood. Thought by most experts to be an auto-immune disorder, vitiligo does not affect general health, though sufferers must protect themselves from the sun, as the depigmented patches have no protection against solar rays and burn easily. The main effects are, however, psychological.
Progress of the condition is unpredictable. Some people develop one white patch that never spreads. More commonly, other patches develop and increase in size. The usual sites are the hands, the armpits and groin and around the eyes, mouth and genitals. Sometimes, patches will repigment and disappear for no apparent reason. Understandably, patients can become preoccupied with the condition, obsessively looking for new marks or measuring existing ones to see if they have grown.
The unwelcome curiosity Whitton experienced adds to patients’ misery. Among people from parts of Asia, vitiligo is associated (quite wrongly) with leprosy, and the resultant prejudice can affect every aspect of a sufferer’s life, including job and marriage prospects. Some avoid having children for fear of passing the condition on. The psychological effects of vitiligo are not related to the severity of the condition.
“Somebody with a small patch can find it much more difficult to live with than another person whose body is completely covered,” says Carl Walker, a research fellow in psychology at London Metropolitan University, who has just completed a study on the effectiveness of cognitive behavioural therapy (CBT) on vitiligo patients.
“For some people, the condition presents no problems at all. In other cases, the patient’s body image is so poor that it causes sexual and relationship problems and prevents them from communicating openly with their partners.”
Walker found that CBT, in which patients were given various strategies to counter bad feelings they had about themselves, significantly improved their general mental health, body image, self-esteem and quality of life. Counselling alone did not have the same effect.
Whitton, who underwent nine months of therapy, believes it should be an integral part of any treatment protocol for people with skin disease. “I was told to look in the mirror without wearing make-up and tell myself that although I had vitiligo, it was only a part of me and that I wasn’t hideous. It gave me a sense of perspective and taught me to accept my appearance.
“The first time I went out without make-up, I was shaking like a leaf. I got to my destination and burst into tears. I couldn’t stop sobbing. Then I had this feeling of euphoria. I had left the house for the first time in 25 years without my make-up and nobody had said anything. The sky had not fallen in.”
Although managing the condition is important, what most sufferers want is repigmentation. A decade ago, there was little treatment on offer and patients were told to get on with their lives.
“Since then, there has been a lot of research and some people have repigmented,” says Nerys Roberts, consultant paediatric dermatologist at Great Ormond Street Hospital. “There is certainly hope now, but most patients don’t bother going to their GP because they have a family history of the condition and their relatives were told that nothing could be done. Those that do get to their GP may be told the same, even though it is no longer true.”
Delay can reduce the chances of successful treatment. One of the most significant findings has been that vitiligo needs to be treated when the disease is active and, ideally, in its early stages. Children respond better than adults.
“It is an inflammatory disease and going in with anti-inflammatories when nothing is happening is like entering a battlefield after all the soldiers have been killed,” says Dr Roberts. “Treatment needs to take place during the battle itself.”
The first treatment usually involves strong corticosteroid creams. Light therapy has been used for many years: narrow-band UVB radiation is replacing the traditional UVA lamps. Success rates for UVB are high, with 75 per cent of patients repigmenting and holding on to the restored colour.
Some patients have repigmented by using regular low doses of UVB light, together with a cream known as PC-KUS that is applied all over the body. Great claims have been made for this treatment, developed in Germany by Prof Karin Schallreuter of Bradford University but not available on the NHS. A controlled trial was a failure, but advocates of this approach claim that the formula of the cream used in the trial was incorrect.
Maxine Whitton is among Dr Schallreuter’s successes. Using the cream and light therapy three times a week for four years, she has regained about 90 per cent of her skin colour. But although amazed and delighted by this success, Whitton says that her attitude to her vitiligo has changed, mainly as a result of psychotherapy. “If I lost my colour again, I cannot say I would not care, but whatever happens, I am happy in my skin now. I know who I am and vitiligo doesn’t change that.”
We need fake tans on NHS’
Brigit Cunningham, a public relations executive from West Sussex, has found a new way to disguise her vitiligo – self-tan. Ninety per cent of her skin is covered in vitiligo patches, which have turned her once-bronzed complexion an anaemic white. She feels particularly self-conscious about her appearance in the summer when her depigmented skin burns easily and will not tan.
Two years ago, Cunningham, 43, discovered St Tropez self-tan, and she now has a full body application – it takes an hour and costs £40 – each month of the summer at a local beauty salon.
“It has revolutionised my feelings about myself and gives me a sense of psychological wellbeing,” she says. “I would use it all the time if I could afford it.”
Cunningham, whose 13-year-old daughter Freya also has vitiligo, believes self-tans should be available to sufferers on the National Health Service, as camouflage make-up and sunscreen are at present.
“The psycho-social effects of vitiligo can be awful,” she says. “When Freya was small, we used to tell her that her patches were kisses from the sun and she felt special, but she has been teased in the past and she has become more self-conscious as she gets older.
“She is quite badly affected on her stomach, so if she wants to wear cropped tops this summer, I expect we will have to let her have a St Tropez treatment, too. She already uses a high factor sun cream, which we get on prescription, and it seems very unfair that we should have to pay to cover up the effects of a medical condition.”