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.
Lee Thomas before vitiligo patches
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.
Lee Thomas with his vitiligo patches visible.
“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.”
“If you want to be black again, I can do this for you.”
His search for a better treatment led him overseas, first to Russia, and later Germany. While speaking at a Vitiligo Research Foundation conference in Russia, Thomas was directed to Dr. Karin Schallreuter, a dermatologist and professor at the University of Greifswald, whom he was told could bring his skin color back.
“My face was completely gone at that point and I said that I have had every treatment that there is in the United States,” he said. He flew to Germany to meet with Schallreuter and she laid out her plan for how she could get his color back.
“After talking to her, I told her I decided to try it,” he said. “I told her ‘after this conversation, you’re giving me something that I haven’t had in a long time and that’s hope. That’s a dangerous thing. It’s very disappointing when things don’t work and I’m tired of going through that.
“She said – in her German accent – that if you want to be black again, I can do this for you. But you need to want it.”
Thomas agreed to Schallreuter’s treatment, paying for it out of his own pocket. Many insurance companies consider vitiligo treatments to be a cosmetic issue and often will only pay for treatments in cases where the disease causes social and psychological problems such as depression.
Schallreuter’s treatments did not involve skin grafts or needles, but topical cream called pseudocatalase that he applies once a day and then follows with a UV light treatment over his entire body. He also had to shave his head to allow sunlight to penetrate his scalp.
“She said that my hair was like a bunch of tiny umbrellas,” Thomas said. “I said if I shave my head, I’ll have to cover my entire head with make up. I needed to wrap my head around that.”
Another part of the treatment is a three-week trip to the Dead Sea in Jordan, where the minerals in the water are good for the skin and help the pigmentation process. The combination of the cream, the water, and the UV treatments has helped him regain most of his skin color, which he debuted on June 24.
Thomas, like Candise Jackson, draws strength from her family and friends. Thomas’ co-workers and management at WJBK have fully stood behind him and he’s also learned to combat any negativity with a positive attitude.
“I’m 6-foot-2, about 190 lbs, so I’m not a small dude. At first when people would give me a funky face, I’d give them one right back. But that’s not me. Instead of giving that funky face, I started to smile. When I did that people started to ask questions and show love.
“When I started doing that at work – and I was hiding it at first – everyone started showing love back too. As soon as I changed my attitude, that’s when everyone else’s attitude around me changed. They have been nothing but loving and supportive.”
The slow return of his color has been a learning experience for his 5-year-old daughter. She has only known him to have mostly white skin.
“One time I saw her playing with one of her friends and she says ‘why is your dad’s face part brown?’,” he said. “My daughter said that ‘he’s just turning brown again.’ That’s the best thing about kids is that they just keep going.
“Fear comes from ignorance,” he added. “Once I educate kids – or anyone for that matter – they’re cool with it. It’s the adults that look at you funny.”
His message to anyone with vitiligo is simple: Be comfortable in your own skin.
“There is no right way,” he said. “If you’re comfortable in make-up, then wear make-up. If you want to cover up, then cover up. Don’t let minor incidents let this take you away from living. There is no formula for being comfortable. Just don’t let this disease take away from your personality, your joy, and your life.”