Living with vitiligo

Photo: Yue Wu/Iowa State Daily

Larry Mitchell, sophomore in pre-business, 21, was diagnosed with vitiligo 12 years ago. Mitchell struggles to overcome others’ perceptions of him and his disease.

John Lonsdale

It started with two white dots.

Three weeks went by after the accident before anyone knew what was wrong with him, until the doctor spoke the words that changed Larry Mitchell’s life forever.

Mitchell, sophomore in pre-business, has vitiligo.

“If [the Daily] had come to me a couple years ago about a story,” Mitchell said, “I would’ve said no.”

He can remember the date, time and temperature exactly. Nov. 6, 1998, Mitchell was home from school because of the chronic asthma he’s had since he was 3 days old that also put him in a coma in 2004, but was starting to feel better around 5 p.m.

With the purple BMX bike his grandmother had gotten him for Christmas, Mitchell rode toward a ramp at the 100-year-old, V-shaped tree near his house.

As the 63-degree November air hit his skin, Mitchell couldn’t stop feeling uneasy about the day.

The ramp grew closer until Mitchell pedaled off the ramp as he attempted to do a 360 through the trees and crashed into a chain-link fence.

Mitchell blacked out.

He woke up to his mother, Lisa, standing over him with Band-Aids over the open cuts on his hands and knees. Hysterical, his mother rushed him to the nearest hospital where they lived in Crown Heights, a neighborhood in Brooklyn, N.Y.

After the cuts scabbed over, Mitchell, as any child does, began to pick the scabs off of his wounds, and two white dots formed where his cuts had been. After waiting about a week, the two white dots grew to dime-size and then became bigger patches. Mitchell and his mother knew something was wrong.

“I would have never went outside that day,” Mitchell said.

Vitiligo is an autoimmune disease that results in a loss of pigmentation in the skin.

“[It] occurs in about 1 to 2 percent of the [American] population,” said Christina Warren, nurse practitioner at Iowa Dermatology Clinic. “Usually when people have vitiligo, they’re stuck with it for life.”

Warren said the disease can be hereditary and the body is unable to produce melanocytes, the cells in the body that create pigment in the skin.

Although there is no cure for it, dermatologists all over the world are exploring ways to treat the disease.

The goal of treatment is to restore the melanocytes in the skin, Warren said. Although the prognosis for treatment isn’t good, one commonly used on vitiligo patients is Narrowband UVB Phototherapy, an ultraviolet light treatment.

Probably the best treatment, Warren said, the phototherapy process is slow and requires at least 6-to-12 months of treatment if it works at all, and in some cases, it doesn’t.

Other forms of aid include creams such as Protopic and Elidel. Warren said they often have steroid-like effects, but there’s no guarantee they will work in the two-to-six month period they’re supposed to.

“You can try systemic steroids, but those are dangerous to take long term,” Warren said. “We’ve tried topical cortisones, and they work to some degree to help to turn it around. Once you get it that widespread it’s so difficult to treat.”

“These people are desperate to get a treatment. We give them something to try, but also tell them that this may very well not work for them.”

Now 21, Mitchell still hurts as badly as he did 12 years ago.

“I get observed by at least 100 people on average every day,” he said. “No one says nothing, but everyone turns and looks … turns and looks away.

“People fear what they don’t understand, and rather than try to find out, they either become biased against it whether they be name-calling or it being a physical attribute, or they just don’t want nothing to do with it.”

A couple years ago, Mitchell wanted to go on a social website but wasn’t sure if it would be a good idea. While his family badgered him about getting on one of them and actually creating four MySpace profiles, Mitchell deleted them each time.

“How many people you think would wanna date me?” Mitchell asked. “No, scratch that, be my friend? No, how many people would actually give me the time of day?

“You know, in the beginning I used the ‘why me?’ sort of thing … I lost a lot of friends and family members, but it opened up my eyes and showed me who was there for me.”

Since his accident, Mitchell has shut himself off from the world for the most part. He has experienced discrimination in job interviews where managers have turned him away in less than 30 seconds from him leaving the elevator door to people asking him about his “burns.”

As his skin began to change from dark to pale white, he locked himself in his room for months at a time – skipping school but still doing his homework. He felt like he couldn’t trust anyone anymore.

“I had one best friend, Kelsey,” Mitchell said. “After the accident, he acted like he didn’t know me around everybody else. I remember one day he said, ‘Who are you?’ What do you mean who am I? That was one of the worst experiences of my life … the speed and quickness of the amount of time it took to lose the people around me…”

Nearly a year ago, Mitchell was on a bus when someone came up to him and started talking to him – a neighbor of his.

Speechless, Mitchell said he felt like he was a girl getting asked out on a date. He couldn’t believe that somebody wanted to be his friend.

“I was just amazed. The whole year I had been here and no one, no one had ever said more than hello to me.”

Mitchell has people who come up to him and express they are unsure how to approach him and try to ask him what happened instead of just staring at him.

“Every time that happened it brought a tear to my eye, because people can sometimes stare till they burn a hole through your soul.”

Mitchell has Type 2 vitiligo — the worst type according to him, because it’s in between Type 1, which doesn’t spread as fast, and Type 3, which is total coverage.

Within a span of 10 to 20 years, if the disease passes 35 percent of your body, it becomes irreversible.

If he is outside in weather hotter than 85 degrees Fahrenheit, he is supposed to be in water or in the shade.

Mitchell’s pale white patches have covered more than 35 percent of his body. His face is a mixture of brown and white, and as he pushes up his sleeves while speaking, one can see the nearly-amassed coverage of his arms.

Phototherapy worked for Mitchell. The last time he did the treatment it brought back the color in his face. Using Protopic, the color from his knees down to his ankles came back, too.

“I got to see my face again,” Mitchell said. “But I got sick. It came back.”

After Mitchell got his color back, he was hospitalized in 2007 for a month and a half due to his asthma. Two and a half weeks later, the disease came back just as it had started – the white dots.

“That’ s my only wish,” Mitchell said. “You know how many nights I stay up and pray, and I’m not even a believer, and I pray. Just to go back one time, just one time, I never would have went outside. I was talking to my mom the other day and told her that I’m ready to be one color.”

Lisa knew there wouldn’t be a cure for her son’s disease. As she reads the book he wrote about his disease for a high school class over the phone, she recalls the hardships they have gone through.

“At one time he thought I didn’t want to walk the street with him,” Lisa said. “He would sit in the dark, keep everything up inside. He wanted to kill himself. You know what I used to tell him – you wanna kill yourself, go ahead. You cannot feed negativity with negativity.

“People are surprised by me saying that, but nobody else was there when I was laying there in pain with him. He came out of it. ‘If you’re under that situation, lift your head up and walk the streets high because you never know what tomorrow will hold. You know what, I love you all the same … black, white, purple. All that matters is that I love you,’ that’s what I tell him.”

Mitchell is often asked why he stopped doing the treatments if they were helping him.

Whispering, he stares at the cement ground around the picnic table he is sitting on and explains that it’s become a part of him. Although he used to refuse to let his disease take over, he now realizes that it doesn’t change who he is as a person. Even if a new breakthrough in science came through, Mitchell would more than likely turn it down because it would change his life all over again.

“I stopped wearing shorts,” he said. “I never wore open-toed shoes either. Soon as it spread to my knees … last year was the first time in 10 years I put shorts on again.”

As he sits down to eat a turkey sandwich and to talk more about his disease, Mitchell says he wasn’t going to be able to do a photograph until he realized how important it was to show how far he’s come on the inside.

“There’ s always a part of me that wants my skin back, but I have a new wish,” Mitchell said. “I want to see the other side.”

Unwrapping the sandwich paper, he stares down at his hands and begins to carefully move his finger right above his middle finger where the white dots used to be but have been replaced by the pale, white patches. With a huge smile, Mitchell looks up from his hands.

“Going back means giving up all I’ve learned from it,” he said. “I don’t care which color I am, let’s just be one. This way, people will stop viewing me like they see me, and start viewing me as I am.”