Why Is There Still So Much Stigma Tied to Vitiligo?

According to the AAD, vitiligo is an autoimmune disease, meaning it develops when your immune system attacks healthy parts of your own body—in this case, the pigment cells in your skin, called melanocytes. “It is not a transmissible infection,” Vicky Zhen Ren, MD, an assistant professor of dermatology at Baylor College of Medicine, tells SELF. This means that you can’t develop vitiligo from touching someone with the condition.

Each person’s experience with vitiligo is unique.

“There is no typical experience,” Ife J. Rodney, MD, founding director of Eternal Dermatology Aesthetics and professor of dermatology at Howard University and George Washington University, tells SELF. “Some people with vitiligo may experience rapid pigment loss, while others may experience a slower progression. It can be milky white patches or different shades of brown extending to white. Some are even called ‘confetti,’ meaning specks of white on the skin. It can present in so many ways.”

The condition’s variability impacts how it’s treated too, Cindy Wassef, MD, assistant professor at the Rutgers Robert Wood Johnson Medical School, tells SELF. “Each case of vitiligo is different and each responds to different treatments,” she says. While vitiligo can’t be cured, it can be controlled with treatment, Dr. Wassef says. The goal of treatment is usually to restore lost skin color and stop the patches and spots from getting bigger, the AAD says. 

Vitiligo means different things to every person with the condition. “Having vitiligo on the face as a dark-skinned Black girl” is particularly challenging, Stephanie Kamwa, 33, who was diagnosed more than 20 years ago, tells SELF. “It is the first thing people see when they make eye contact with you—and having dark skin with half [of your] face being white is definitely something that stands out.” Kamwa says that when she goes out without makeup on, people often stare. 

Monyouette Campbell, 49, has had vitiligo since she was a small child and tells SELF that she also regularly fields unwanted attention from people. Still, she says, “I have learned to embrace my skin.” 

Having vitiligo can seriously impact a person’s mental health.

The people SELF spoke with opened up about how the skin condition has affected them emotionally and, in some cases, even influenced the person they’ve become. “Living with vitiligo definitely impacts your personality,” Kamwa says. “In my case, I had to become strong—and perhaps too strong—to protect myself from potential mockery or insults.” This, she says, has sometimes made her feel “defensive all the time.”

McCarthy says she’s faced bias in previous job searches because of the way her skin looks.  “A few years ago, I applied for a job in sales at a hotel,” she says. “I remembered one of the senior management staff saying, ‘This is a position that deals with clients,’ and other words to the effect that they could lose business if I was in the position.”  

Brittany LaRue, 38, who has had vitiligo symptoms since she was 18, tells SELF that it took her a decade to feel comfortable with her skin. “I used to cover it up any way that I could,” she says. “I would even tell my friends to warn their family or friends to not stare.” Now she views her skin in a more positive light. “People don’t usually forget me,” she says. “Between my energy and how unique vitiligo is, people always seem to remember me.”