Disease Changes Skin Color, Not Identity

Mysterious disease called vitiligo causes skin pigmentation to disappear.


March 28, 2008 — -- Looking at Texas teenager Desiree Simmons, you might easily think she was born white. You'd be wrong.

"I know that I'm a black girl and that's what I am, even though it appears that I'm something else," Desiree said.

A medical mystery doctors still don't fully understand made her skin color different from that of her brother and her parents. When people see them together, many assume the 14-year-old was adopted.

But Desiree was born with the same skin tone as the rest of her family.

When Carolyn Simmons first noticed a white spot on her 5-year-old daughter's finger, she thought Desiree had burned herself in the kitchen.

It wasn't until the spot grew that she started asking around and a friend told her it might be vitiligo. Carolyn Simmons said the name rang a bell: "I was like, what's that V-word?"

What started as a tiny dot on Desiree's' finger also appeared on her knees and feet and continued to spread. Her mother said that within six months the disease had advanced to every part of the little girl's body.

The mysterious and increasingly worrisome ailment was finally diagnosed. Desiree had vitiligo, a skin condition affecting more than 1 million Americans, according to the National Institutes of Health. The good news is that the disease is not fatal. The bad news is there's no cure and the cause remains a mystery.

With vitiligo, pigment cells that provide skin color are suddenly attacked by the body's immune system and destroyed one cell at a time. The disease affects people of both sexes and all races equally, but is much more noticeable in those with darker complexions.

Researchers have identified a gene common in vitiligo patients, but for the disease to blossom it needs a trigger, and that could be almost anything.

"We have patients who say, I got mono and then a month later I had white spots," said Dr. Nanette Silverberg, a vitiligo specialist at New York's Beth Israel Medical Center. "I've had a patient say, 'I got divorced, within a few weeks I had white spots on my skin.' There is no one universal factor."

Doctors had no explanation for why Desiree suddenly developed vitiligo.

Vitiligo may not be life threatening, but it can be psychologically devastating. Patches of depigmented skin appear seemingly at random, altering a person's appearance and sometimes threatening to upend one's identity. It's common to try and hide it with makeup, but the Simmons family opted against that solution.

"We wanted Desiree to feel good about herself," Carolyn Simmons said. "You know, this is who you are." She said the family chose to work on Desiree's self-esteem and build her confidence, focusing on the girl and not the disease.

After three years, vitiligo covered 60 percent of her body. Doctors couldn't say whether or where the disease would continue to spread.

Vitiligo progresses differently with each patient, according to Silverberg.

"There are no blood tests, there are no biopsy tests," she said. "There are no X-rays or scans you can do, no MRIs, ultrasounds. There's just nothing that will predict the course of illness."

Vitiligo can stop as suddenly as it begins and can come back at any time.

While there is no permanent cure, treatment options such as creams and ultraviolet light therapy can restore color. The effectiveness of these treatments varies from patient to patient, and it can take months or even years to repigment.

None of the treatments worked on Desiree so her family decided to let her vitiligo run its course. For six years the family watched as the white patches on her dark skin spread to her entire body.

As her appearance changed, she faced many questions. Other children asked whether she was dirty, or whether she had been hurt or burned, and some teased her.

"I wouldn't really say anything because I'd just not let it affect me and just try to be the best me I could," she said. "I decided just not to let it stop me in what I want to do in life and everything."

Today, Desiree's natural pigment is 99 percent gone; only a few spots of the old color remain. She said when she looks in the mirror she sees, simply, herself.

"I just see me. I know that I'm just a normal kid and I just have a little bit of different skin condition, and that's it," she said.

For Carolyn Simmons, the complete transformation was a blessing.

When the vitiligo was at its worst, she said, people couldn't see her daughter's face through the spots. The family had always told her she was beautiful, but when her skin evened out her beauty shined through.

"Once [the spots] left, you started saying, 'oh man, she is beautiful,'" Carolyn Simmons said. "We told her that even with the spots, but you really started seeing her features once she lost all her pigment."

Desiree's case is extremely rare. Less than 1 percent of patients with vitiligo lose all their color. Most sufferers are caught in the middle, like Lee Thomas, a television personality in Detroit who hid his condition for years. He recently wrote a book about the traumatic secret hidden under his television makeup.

"I don't know if you can imagine looking in the mirror and not seeing you," Thomas said. He wrote in his book "Turning White" that sometimes he saw a monster looking back in the mirror.

"And not only did I wonder, you know, did I see a monster?" he said. "I wondered, did other people, would other people see a monster when they saw me? Especially when kids cry when they see your face."

Thomas is now determined to spread understanding about vitiligo and those who have it.

"The hardest part is sometimes the looks that people give me. Sometimes people give me funny looks or say things under their breath," he said. "That's hard."

Thomas said that having vitiligo has forced him to clearly define himself as black.

For Loretta Cooper, this issue of race and identity has been at the forefront of her 40-year struggle with vitiligo. She said that although the disease doesn't cause physical pain, it comes with a heavy emotional load.

During her first pregnancy in 1969, Cooper noticed white spots around her eyes. By the time doctors gave a name to her disease, her whole body was covered.

"There were those days where you just said, you know, it's too painful," she said.

In spite of that pain, she decided to not hide her vitiligo, and to deal with the stares and the comments.

Like Desiree Simmons, Cooper had the rarest form of vitiligo. After 15 years, most of her pigment was totally gone. For people who meet her now, she appears to be white, and she said this has made a difference in how she is treated.

"When you go into the store, you get, 'may I help you?' and, you know, 'what are you looking for?'" she said.

She said she can go anywhere any other white person can go and be treated without incident. She faces challenges when she goes into communities that are predominantly black.

"Sometimes I just want to put it on my forehead: I do belong here! It's OK for me to be here. I'm one of you!"

"I look in the mirror, and I see beyond the color of my skin. I see the face of my mom, my great grandmother," Cooper said. "I still am who I am in spite of how I look, and that's something that somebody can't take away from me, my experiences being an African-American woman."

Cooper says her struggles with a rare medical mystery hold lessons for everyone, both black and white.

"There are more things that are alike about all of us than are different, you know," she said. "We want our families to be happy. We want to live as much of a good life as our circumstances allow us to live. And if people can just come away with that and maybe change how they see and perceive and interact with other people, with a more compassionate outlook, that would be wonderful."

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