‘Everybody’s journey is different’: Meet the B.C. man who started Canada’s first vitiligo support group

A B.C. model and actor is helping people with vitiligo come together and share their stories with a support group he co-founded.

Vitiligo is a condition that causes skin to lose its pigment in patches, which happens when melanin-producing cells die or stop working. An estimated 0.5 to 2 per cent of the world’s population has vitiligo, according to the Canadian Dermatology Association.

Omar Sharife told CTV News living with the condition can be especially challenging if there’s nobody to talk to about it.

“It’s essentially a condition that changes your identity,” he said. “There’s a lot of mental health issues and challenges when you’re established as an individual and then your identity and skin colour is changing beyond your control.”

Sharife said he’s moved into a state of greater self-acceptance over the last few years because he connected with other people who have vitiligo, and finally heard other people share the feelings he’s had for decades. That’s why Sharife helped create Vitiligo Voices Canada at the beginning of this year, which calls itself the first support group of its kind in the country.

“There are a number of really great support groups across the U.S., but Canada is really lacking in that sort of support group or connection,” he said.

Vitiligo Voices Canada hosts a regular virtual drop-in for people to share their experiences. And since June is vitiligo awareness month, the group has been posting personal stories on its social media to help get word out.

“It’s incredible the amount of help that it gives people, and it’s a big part of people’s journey wanting to just speak out loud the truth of what they’re going through,” Sharife said.

He adds that vitiligo affects everyone differently—some people might get one spot, while others’ skin will change dramatically, and some people develop it at a young age while others get it when they’re older. And people have differing levels of acceptance of their condition. “Everybody’s journey is different,” he said.

That being said, Sharife’s message for Canadians is to be sensitive and aware that everybody is at a different stage of their vitiligo journey—something to keep in mind on Tuesday June 25, which is World Vitiligo Day.

Several landmarks will light up in purple for the international awareness day, including BC Place, Science world and the Vancouver Convention Centre. Vancouver City Hall will be lit up in purple on Wednesday.