Patients share what it's like to live with vitiligo
LITHONIA, Ga. - In a Lithonia, Georgia, living room, a small group who could teach us a lot about loving the skin we're in.
There's 51-year father of 2 Perry Whaley.
WATCH: A small group is on a mission to teach about loving the skin you're in
"I'm a car salesman," Whaley says. "So, I'm this guy in front of people all the time."
He first noticed a white discoloration on his dark skin in his mid-twenties.
"Two corners, right by the corners of my mouth, and my eyes, started appearing," Whaley remembers.
Diagnosed with vitiligo, a disorder that causes the skin to lose its pigmentation. But, it took Whaley at least a decade to make peace with his changing skin.
"Cause I'm trying to tan it, mask it, put it away," he says. "But it was popping up in more places."
Same thing for Natasha Pierre McCarthy, whose skin started turning white at 28.
"And they said it was vitiligo," she says. "And I said, 'Vitiligo? What's that?'"
It's thought to be an autoimmune disorder, in which the body's immune system mistakenly attacks and destroys the cells that produce pigment in our skin.
The disorder may run in families, and some people say it can be brought on by extreme stress, or an injury to the skin like a bad sunburn.
Vitiligo not contagious, but Natasha says it sure feels like it sometimes,
"I'd go through the drive-thru to get something to eat," Pierre McCarthy says, "They would not want to touch my hands. They would not want to take my money. Sometimes they'd give me my food for free!"
K.K. Brantley, just 12, is the group's youngest member.
She began developing white patches on her face in preschool.
Now in the 6th grade, she says navigating middle school can be tough.
"I was walking by by some 7th graders," Brantley says. "They were in detention, I guess. And I was walking by to go get my lunch, and I hear one of the kids go, "Hey, Michael Jackson!"
The pop star reportedly sufferer from vitiligo.
K.K. has learned to turn the other cheek.
"I don't really care what the other kids say about me because my mom used to tell me I'm beautiful, no matter what," she says.
Vitiligo is thought to affect about 2 to 3 percent of the U.S. population.
It tends to hit people in their 20's, 30's and 40's. Sometimes, it affects children.
"There are three million people in the US alone with vitiligo," says Pierre McCarthy. "65 million people all over the world with vitiligo. And it's just, 'Why are we not paying attention to this?'"
To raise awareness, the group created Vitiligo Bond, Inc., taking to Facebook to share their stories of what it's like to live with their condition.
Perry Whaley wants people with vitiligo to embrace their skin.
Vitiligo Bond, Inc. will launch a nationwide tour with an event in Houston, Texas, later this month.
"I don't want to come with vitiligo being a disorder in my life," he says. "Because I'm taking it to a different level in reference to strength, and courage to other people. When they see me on Facebook or Instagram and they say, 'Man, this guy can do it. I can do it!'"
The hope, the group says, is that more children like K.K. Brantley learn to be proud of their skin.
"This is our time to let the world that we, too, like to love," says Whaley. "We, too, like to be a part of this community without being different."
To learn more about Vitiligo Bond, Inc. visit https://www.facebook.com/VITILIGOBONDINC/?hc_ref=SEARCH
NEXT ARTICLE: Pregnancy can cause strange heart symptoms