THE JACKSON EFFECT  - Darcel's Story

 Ever since the death of Michael Jackson there has been a surge of interest by the media on the subject of vitiligo.  There have been features on TV, radio and in the press.  Two articles in particular have highlighted the issues at stake for normal sufferers of vitiligo.

Both the Daily Mirror and the Sun reported the story of Darcel de Vlugt who was five years old when she first noticed the two tiny white marks which appeared on her skin. Within months the patches had spread, first over her arms and legs before moving to her face. They continued to spread and gradually all of Darcel's dark pigment disappeared, transforming her skin from black to white. Darcel,  from Islington, North London, was born to black parents from Trinidad and was diagnosed with vitiligo following her fifth birthday.  It spread so rapidly that by the age of twelve, 80 per cent of Darcel's body was white and by the time she turned 17 her skin had completely changed colour. Darcel travelled a lot as a child as a result of her father's job with the United Nations. She lived in Trinidad, Israel, Syria and Cyprus before finally settling in London. Her parents believe the stress of moving around so much may have triggered the condition.

Darcel, now a 23-year-old fashion designer, who must wear Factor 100 sunscreen even in mild sunshine, told the Mirror of the bullying and identity problems she encountered as her skin lost its colour. “Growing up with vitiligo was very hard. My skin was discoloured and patchy for years, it was neither black nor white and I was viciously bullied as a teenager. I would get called all kinds of things, such as spotty or Dalmatian. I remember going to a sleepover and someone spreading a rumour that if anyone slept in the same room as me they would catch my skin condition and die. I missed out on so many normal social things that teenagers do because I was so self-conscious. It is very hard looking like a white girl when I was born black. Michael Jackson was the only other person I knew of who had the condition - He was a great source of comfort to me because I didn't know anyone else in the world who was going through the same thing as me.  I believe that Michael had vitiligo, but I think he had his skin bleached to give it an even look and hide the patches. I understand why he bleached his skin. Whenever I saw pictures of him he always had loads of make-up on and he would never be seen in shorts. I also used to wonder about the glove and whether he wore it to hide the patches on his skin."

The Sun newspaper also reported Darcel's story,  commenting that “The transformation that pretty fashion designer Darcel de Vlugt, 23, went through is more common than most of us might think,  adding weight to claims that Michael Jackson's change in skin colour was indeed medical rather than cosmetic.” 

The Sun supplemented its story with quotes from Professor David Gawkrodger, consultant dermatologist at Sheffield Teaching Hospitals NHS Trust who said: "It's widely accepted now that Michael Jackson suffered from vitiligo and I suspect he used depigmenting creams to clear the remaining pigment from his skin.  Vitiligo often results in smaller patches of skin losing pigment, but the whole body can lose its colouring. While it is never life-threatening, vitiligo may have a crippling affect on self-esteem because it affects visible parts of the body like the hands and face. It can be  hugely distressing, especially for black and Asian people as the white patches really stand out. We have some idea of what's happening, but are less clear on why. While there are several theories, the most widely accepted is that your own immune system attacks your skin pigment cells. Why it does this is, is anybody's guess. There are options for treatment including creams to repigment white patches, specialist make-up or six-month courses of ultra-violet light treatment. Best results are achieved by treating it as soon as possible and seeing what works. We desperately need more research into its treatment, but the funding simply isn't there."

The Voice newspaper also carried a feature on Michael Jackson and vitiligo and included comments from  Maxine Whitton who has lived with vitiligo for over 50 years and is a former chairperson and current patron of the Vitiligo Society and  Helen Broughton, a former manager of the Vitiligo Society who is a specialist nurse and also has vitiligo.

Maxine said “I wish they would tell the truth about Michael Jackson and vitiligo. A lot of his actions were due to the fact that he had the disease.   If someone came out and said this is the truth, I would feel better because I believe he has been misunderstood on this level.  What is bad for people with vitiligo is to be noticed for looking odd, stigmatised, looking patchy, called names like giraffe and panda.

There have been Oprah Winfrey interviews and lots of things written about him that says he has vitiligo and the press completely ignore that. People don’t even try to find out what vitiligo is. They just say he changed his skin colour. “ 

Maxine continued, “It is likely that he was emotionally blindsided by the appearance of white patches on his black skin – and that he may not have had a choice but to bleach because his skin was losing much of its colour. Other Asian and black people who become so traumatized by the stares and teasing have opted to completely bleach their skin to get one pale tone. It is a prescribed treatment recommended for severe cases.  Jackson would not have opted for full bleaching unless his skin condition had been really severe. The treatment destroys the remaining cells. It is a very difficult thing. They would not do it unless you have lost a certain percentage, 70 or 75 per cent (of skin colour) naturally with vitiligo. What the problem is that people are ignorant of this disease and that is why they say he chose to bleach his skin. He did not.”

Helen Broughton said, “Unfortunately the condition has not been given enough attention because of the deep emotional scars it leaves in those affected - who often try to hide the condition - and public misconception and lack of awareness about vitiligo. Nobody has stopped to consider: what does it really mean for a very famous black person to be living in the spotlight and having the pigment disappear from his skin.

When you have very advanced vitiligo, you have three choices - (1) you camouflage it for the rest of your life which is very difficult or (2) you have the confidence to come out and show the world that you are black and white which psychologically is an incredibly difficult to do or (3) you use hydroquinone, as I did, to get rid of the remaining pigmented patches so you become all one colour. For a number of Asian and black people, who make that decision, it has huge cultural impact. Several have been rejected by their cultures and their families and I think that is one reason why it has been very hard to get people to talk about it.

I know vitiligo sufferers who have moved elsewhere to start a new life after bleaching. But what could Michael do? I know people in the black community feel he sold out but I would like them to be more understanding of how difficult is it to live with vitiligo not only for him but also for millions of people. It really does devastate people’s lives. ”