“Will it spread to my face?” This is the first thing that people want to know when vitiligo is diagnosed, a common skin condition which causes white patches where the skin has lost its pigmentation. But it’s impossible to predict its progress, as Daniel Britten, 38, a writer, discovered when his vitiligo was diagnosed last summer: “The patches appeared on my legs and I was shocked when my GP said it was incurable and likely to spread all over my body, and surprised that he regarded it as trivial when it could obviously have a huge impact on me.
“In the first few weeks I used to wake every morning and check my whole body for new patches. Not knowing how bad it might get was unsettling. I was also terrified of being exposed to the sun, but I had a gardening job, so during the hottest month of the year I sweltered miserably in a hat, trousers, long-sleeved shirts and masses of suncream. I must have looked strange.”
Vitiligo is surprisingly common, affecting 1 in 100 children and adults. Sufferers have a greatly increased risk of skin cancer because the white patches have no active melanocytes, the cells that produce the pigment which protects the skin from sun damage. Some dermatologists advocate wearing sunblock as well as covering up.
Another good reason to avoid the sun is that a tan makes vitiligo look more prominent because it emphasises the contrast between areas of unaffected skin that go brown, and the patches of vitiligo, which remain white. On black or dark skins the contrast between the two is inevitably more noticeable.
Vitiligo is arguably harder for men, who often feel self-conscious about wearing camouflage make-up; the most desperate calls to the Vitiligo Society’s helpline used to be from young men, some on the verge of suicide.
Advertisement
Apart from the increased risk of melanoma, a malignant tumour associated with skin cancer, vitiligo is harmless and painless. But because it can be so disfiguring it can cause huge psychological distress. Yet for a condition that is so common it’s rarely talked about, and few celebrity sufferers have come out, apart from the comedian Graham Norton and Michael Jackson, who claims that is why his skin is so pale.
Britten’s vitiligo has not spread since the patches appeared on his legs last year; there has even been some repigmentation, which may be due to the steroid cream prescribed by his GP. In many cases vitiligo never spreads, while in others it can flare up after years of no change. The cause is unknown, although some researchers believe vitiligo is an auto-immune disorder.But there are links with stress, thyroid conditions, hormonal changes and diabetes. There also appears to be an underlying genetic link which predisposes certain people.
Research has been limited — presumably because it is not life-threatening. The only specialist clinic in the UK is the Institute for Pigmentary Disorders, at the University of Bradford, which has researched the condition for 20 years. About 300 patients attend a year. Its head, Professor Karin Schallreuter, says: “People see vitiligo as a cosmetic disfigurement that you can live with. But many of the people I see are in despair.” She has developed a treatment cream, called Pseudocatalase PC-Kus which, in conjuction with UVB light treatment, she claims can halt the condition in 95 per cent of cases. But it’s expensive, costing more than £1,500, and involves installing your own UVB light cabinet, as daily sessions are needed which is difficult to arrange in NHS hospitals.
Patients apply the cream, which is activated by brief exposure to narrow-band UVB in the light cabinet. She explains, “People with active vitiligo do not have the enzyme catalase and as a result their bodies generate higher than normal amounts of hydrogen peroxide molecules. As the pseudocatalase cream reduces the body’s production of these, the skin becomes repigmented.”
However, a double-blind study of this treatment by a drug company came up with disappointing results; Schallreuter claims this was because preservative was added to her original formulation for the cream, which de-activated it.
Advertisement
Other treatments — such as steroid creams and UVB light therapy on the NHS and laser treatment in private clinics — have mixed results and, as with pseudocatalase cream, even when successful there is often a relapse. So finding a treatment that works for the individual remains a matter of trial and error.
For further information, contact the Vitiligo Society: 0800 0182631; www.vitiligosociety.org.uk
Case study: ‘I try not to think about it spreading on my face’
Advertisement
Gurdeep Romanay, 29, a marketing consultant, developed a patch of white skin on her ankle when she was 10; a decade later, when the condition suddenly flared on her legs and arms, it was diagnosed as vitiligo.
Since then it has spread to her hands and neck, and there is a tiny patch on her face. “There was a time in my early twenties when I found a new patch of white skin every day. That was hard because you think, where is it going to start next? You feel helpless.
“At first I didn’t know how to react to the fact that my skin was changing. I am a strong, confident person and tried to deal with it on my own, but I got quite upset. Eventually I recognised that I needed support, so I talked to my family and friends, and they’ve got me through the down times; so has talking to other people with vitiligo.
“It seems that the more I treat the condition the worse it gets. My dermatologist prescribed steroid creams and last year I tried a new homoeopathic treatment. Both repigmented some areas, but when I stopped the treatments my skin not only went back to how it was but I developed new patches.
“Recently I’ve been using a new cream called tacrolimus, prescribed by my GP, on my neck. It seems to be working; the pigment is coming back in little brown spots.
Advertisement
“I worry about sunburn and skin cancer, so I always use factor 60 sunblock. But I don’t let vitiligo stop me enjoying holidays in hot countries. There was a time when I covered up, but now I wear bikini tops, although I’m still a bit funny about showing my legs.
“I don’t use camouflage creams, except on the tiny patch of vitiligo under my eyebrow. I try not to think about it spreading on my face — that would be tough, and it’s hard to know how I’ll deal with it. My family help me to think positively; that’s what keeps me sane.
“I’ve learnt to accept vitiligo as part of me. There are many worse conditions, and I count myself lucky that it is only cosmetic.”