Home > 2017 May/June > Living with Vitiligo

By Emiene Wright

“I am there person I am. Vitiligo can’t change that,” Jova Jamison

It started with a couple of tiny spots.

Jova Jamison and Daniel Austin had only recently started dating in 1996 when Austin noticed white dots here and there on Jamison’s skin. Austin had no idea what caused the spots on his partner, but Jamison did.

He went to a dermatologist who confirmed that he was one of the two million Americans living with vitiligo. People living with vitiligo handle the disorder in different ways. Some choose to hide it, others embrace it and some try to fight it, but there is no cure.

The disorder has gained more recognition in recent years as celebrities have revealed their struggles with the skin condition. Reality TV star Tamar Braxton, actor Terrence J. and pop icon Michael Jackson all famously struggled with the disease. Lee Thomas, an entertainment reporter at WJBK-TV in Detroit, published a memoir about his vitiligo journey titled “Turning White: A Memoir of Change, in 2007. Model Winnie Harlow rose to prominence on “America’s Next Top Model” by using her unique complexion to standout. She’s now a spokesperson and activist with nearly two million Instagram followers.

Jamison isn’t bringing that kind of attention to the disorder, but he’s not hiding it either.

“My mom and grandmother had the same condition,” said Jamison, a Charlotte native. “My grandmother is very light-skinned, so it’s less noticeable on her. But my mother wears makeup to cover hers.”

Jamison, 40, has lived with the condition for half of his life. He doesn’t try to cover his.

“I am the person I am,” he said. “Vitiligo can’t change that.”

Vitiligo occurs when a person’s immune system begins attacking melanocytes – the cells that produce skin color—so that the cells either die or stop producing melanin. Small white dots appear on the face, hands or other parts of the body. Typically, the dots become progressively larger.

Dr. Alyssa Daniel of Dermatology, Laser and Vein Specialists of the Carolinas says there are multiple treatments for the condition, including topical steroids and special UV light treatments. In cases where the majority of the body’s color is lost, patients sometimes use depigmentation creams to bleach the remaining skin white. All have their benefits and concerns.

“I may start a patient off with a topical steroid for a month or two, which spurs re-pigmentation, or injections,” Daniel said. “But that can lead to depressions and color changes in normal cells in cosmetically sensitive areas, such as around the nose or mouth. Oral steroids can stop the attack on melanin-producing cells by suppressing the immune system.”

The excimer laser is effective for dark-skinned patients who are afflicted with the disease on their faces, Daniel said. It doesn’t aggravate the other skin cell functions. But she called that “a last-ditch effort,” because the success rate is only 50 percent to 75 percent. That may sound high, but if it’s not close to 100 percent successful then it’s not effective, Daniel said.

“People are still not happy with the results,” she said.

Jamison tried taking B-12 vitamin daily. The treatment worked temporarily, but then the spots would return.

“My vitiligo was too aggressive,” he said. “Eventually, I just decided to live with it.”

The disorder is most aggressive on his hands, which almost all white. It primarily affects his hands, neck and eye. Whenever he gets a wound such as a cut, the skin heals, but the pigmentation doesn’t return.

Vitiligo can affect a person’s self-esteem. Daniel encourages people to build a sense of community and acceptance via social media. Facebook and Tumblr groups are particularly active, as well as Vitiligo Friends (vitfriends.org) and Vitiligo Support International (vitiligosupport.org).

Jamison knows the sting of ignorance. Sometimes, children at the farmers’ market, where Jamison works, make rude comments about the uneven color on his hands and face. Others try to avoid appearing to gawk, he said. A few ask him directly about his condition. Jamison prefers that.

Whenever he meets someone with vitiligo, they exchange stories about how the disorder started, how they’re treated and how they handle the skin condition.

“Everybody deals with it in a different way,” Jamison said. “My family is pretty easygoing, and I guess because I’ve been in a supportive relationship, I don’t worry about other people’s opinions that much.”

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