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Video: Rare condition changed the color of her skin

By
TODAY contributor
updated 8/25/2009 11:42:10 AM ET 2009-08-25T15:42:10

Darcel de Vlugt is a lovely young woman with white skin — which would be unremarkable but for the fact that she was born black and never tried to be anything different. And that’s why, since she was a girl, she’s always looked to Michael Jackson to help her cope with the rare skin condition that once made her the object of ridicule.

A native of the Caribbean island nation of Trinidad, de Vlugt was a normal little girl in every way. Then, at the age of 5, her parents noticed white spots on her forearm and forehead. The spots didn’t go away; instead, they spread to her legs and then her torso as she grew, gradually turning her skin into a mottled canvas that was half black and half white.

“It slowly was going through my arms and legs and on my torso. By the time I reached 12 years old, it just started spreading very rapidly to my neck and face,” de Vlugt told TODAY’s Ann Curry Tuesday in New York.

Emotionally devastating
Doctors told her parents she had an autoimmune disorder called vitiligo. Affecting as many as 3 percent of all people, it is usually not noticed in people with light skin — but is glaringly obvious in people with dark skin.

Because it is so uncommon, de Vlugt grew up not knowing anyone else who was like her or really understanding what was happening to her. And though she had a strong family and good friends who accepted her, it was still emotionally devastating, especially when she became a teenager.

“You’re already going through so many social changes — dating, all those things,” she said. “A lot of people start to judge you on how you look. Are you pretty? Are you attractive? I’ve been called Spot. I’ve been called Dalmatian. I’ve had somebody tell other people for a sleepover, ‘Don’t sleep in the same room as Darcel. You’ll catch the same thing she’s got and die.’ ”

De Vlugt’s father works for the United Nations, and moved often around the world with his family. During her teen years, when she was rapidly changing from half black to all white, they were living in Cyprus.

TODAY
Darcel de Vlugt suffered emotional pain from vitiligo, particularly in adolescence.
That’s where Michael Jackson came in. De Vlugt heard that he explained his own transformation from black skin to white as a result of vitiligo. Some dermatologists have questioned that, but Jackson insisted he bleached his skin white because of the condition.

“There was no one out there except for Michael Jackson who was saying that they had it. In a way, that sort of was support for myself,” de Vlugt told Curry. She added that she is not among those who doubt whether Jackson had vitiligo at all. “I would absolutely want to believe that yes, he had it. I think there’s a lot of evidence to back it up,” she said.

Mental pain
Now 23 and a fashion designer in London, de Vlugt said she has been totally white since she was 17. Although she seems comfortable in her own skin, she still gets emotional when talking about what she went through.

Even today, she has a hard time convincing people in her native land that she is really a Trinidadian. When she goes into a black club, people look at her as if wondering what that white woman is doing there. And when she travels in white society, she doesn’t feel the same as all the people around her whose skin is so similar to hers.

“I still get people telling me things,” she told Curry, her eyes tearing up.

Vitiligo is not painful. Because it robs the skin of its protective melanin, victims have to wear SPF-100 sunscreen and cover up when they go outdoors because they have no protection against ultraviolet rays and burn easily, said dermatologist Jeanine Downie, who joined de Vlugt in the TODAY studio.

“People with vitiligo tend to blister and burn more, and they have more skin cancers,” Downie explained. “It’s disfiguring. People think it’s contagious. People make people feel badly about it.”

TODAY
Darcel de Vlugt (left) was emotional about her condition as she appeared on TODAY with dermatologist Jeanine Downie.

The mental pain can be agonizing. “It’s psychologically very devastating,” Downie added.

De Vlugt agreed, breaking into tears as she said, “It’s so hard. It’s really, really hard.”

Now, de Vlugt is active in support groups and foundations for vitiligo victims.

“Meeting other people with the condition, it just brings back those memories,” she told Curry, again fighting her emotions.

De Vlugt explained that she appeared on TODAY to educate people about vitiligo. “I really, really hope that by doing this, other people can see that it’s just something that makes us look different. It’s not different in any other way.  It’s not contagious. It’s not life-threatening,” she said.

And yet, she added, “It’s so hard to go through something that’s visual, you know?”

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