It was three years ago that Candise Jackson first noticed her skin changing color.
“My favorite is when people I haven’t seen in a while ask ‘What happened to your face?’,” said Jackson. Initially, white patches developed around her mouth, then later on her hands, stomach, and feet.
While the patches of white skin do not hurt at all – “My areas of depigmentation are more sensitive to the sun but not much else” – the reactions from people on the street cut deep.
“I get lots of stares and an occasional look of disgust,” Jackson, 31, said. “I’ve heard someone ask ‘what the f— is on her mouth?’ I think the location of them brings negative attention.”
Vitiligo, best known for being the skin disease that Michael Jackson suffered with for years, affects one in 100 people. It occurs when melanocytes – the cells that produce skin color – die early or are destroyed by the patient’s immune system. While not a primary cause, environmental toxins and stress can also aid vitiligo’s progression.
“It can be particularly troubling when patients have tan, brown or dark brown skin, as the spots are much more obvious,” said Dr. Charles Crutchfield III, Clinical Professor of Dermatology at the University of Minnesota Medical School. “Socially and psychologically, vitiligo can be devastating and have profound quality-of-life effects.”
While nothing can prevent it, once it occurs, aggressive treatment can keep it from spreading. Treatments include topical prescription creams, special UV light treatments, and special sun protection
“In extreme cases, when only a small patch of dark skin remains, the area can be lightened,” Crutchfield said. “Sometimes small grafts of skin from normal areas can be transplanted into areas of vitiligo. Also, camouflaging skin with make-up can work well.
“Once all of the genes causing vitiligo have been identified, researchers may develop better treatments. The ultimate goal is to find a treatment that will permanently stop the skin from losing color.”
“It started off as one dot on my scalp.”
Of all the places where how you look matters more than anything else, the television business stands out as the most obvious. For Lee Thomas, an entertainment reporter at WJBK-TV in Detroit, his journey with vitiligo – he refers to it as a journey, not a struggle – began in 1993.
Thomas, who has been in Detroit since 1998, first publicly opened up about his disease in 2005 — “The first time my boss saw me without make-up on was when I did that story” — and published a memoir on his vitiligo journey titled Turning White: A Memoir of Change in 2007. Like Candise Jackson, his vitiligo started small.
“It started off as one dot on my scalp,” Thomas, 45, said. “I didn’t think anything of it at first. I did what any other grown man would do and I called my mom. She told me that it was just stress. You know how old black folks are. She said that ‘it’s just stress, baby. It’ll go away.’”
Thomas, who was working at WABC in New York at the time of his diagnosis, said that while the initial spot did go away, other spots on his hands, face, and scalp soon replaced it. He was eventually diagnosed with vitiligo and the news hit him like a bolt of lightning.
“The doctor said that you have vitiligo, and there is no cure, but there are multiple treatments,” Thomas said. “He keeps talking and I didn’t hear anything else he said. I stopped him and said ‘hold up, doc, did you say there is no cure?’ And he said that most people respond to the treatment.
“He said that 80 to 85 percent of people respond to treatment and there are multiple treatments. I was in that 15 percent that did not. So over the years it progressively got worse.”
He has heard the jokes and seen the, at times, visceral reactions to his condition. He has had gas station attendants laugh at him and accuse him of wearing a mask, drawn stares from people on the street and in interviews, and had small children scream and run away from him.
“People look at you crazy and say crazy things,” Thomas said, laughing to himself about some of the funnier names he’s heard. “People look at me, and I’m all white, and they say ‘look at the white-black guy’ or they call me ‘white chocolate.’ That’s what I went through, and I was to the point where it was cool because [the skin color] was gone. That must be how Michael felt.”
Thomas, who also sits on the board of the National Vitiligo Foundation, said that the patches would become more aggressive as he would become more stressed out. Working in television, he would go on air every day after feverishly putting on make-up to cover the growing patches of white skin. It would often take him nearly 30 minutes to cover all of the spots on his face
“We’re not just talking about my face,” he added. “We’re talking about ears, scalp, behind your ears, and your neck. I had to put make-up on from my collarbone, all the way around the front of my head, to the back of my collarbone. You never think about putting make-up on your ear.”
As the years passed, his vitiligo grew more pervasive, with eventually all of the color being gone from his face by 2012. He had finally reached a breaking point.
“I told my boss that there was one more treatment that I’m going to try. If that treatment doesn’t work, then I’m going to go all Michael Jackson on everybody. One day, I’m going to be black. The next day, I’m going to be white.”