Kingstonian founder of Vitiligo Voices Canada shares insights ahead of World Vitiligo Day

Kingston City Hall. Kingstonist file photo.

On Tuesday, Jun. 25, 2024, Kingston’s City Hall will be lit up purple for World Vitiligo Day as a part of the #Lit4Vit campaign. This campaign aims to increase awareness and education for the skin condition vitiligo. Vitiligo causes one’s skin to lose its pigmentation in patches or large areas over the body. It’s a long-lasting condition with no cure.

The #Lit4Vit campaign is an initiative that originated in the United States, and 2024 marks the first year that Canadian landmarks will be lit for World Vitiligo Day, including the CN Tower, Niagara Falls, and Kingston’s City Hall, among many others. This is thanks to the advocacy of Vitiligo Voices Canada, the first and only nationwide support group for patients with vitiligo. The group was founded in the fall of 2023 by Vancouver residents Omar Sharife and Oana Durcau, St. John’s resident Parsa Abdi, and Kingston resident Shahnawaz Towheed.

“Individuals with vitiligo, like myself, we had noticed that in Canada, there was no support group for people like ourselves,” states Towheed.

“Vitiligo is a really isolating condition. It’s not something that people talk about or accept that much in society… So we found each other online, and that’s where we started to share some of our ideas about creating a potential group for Canada.”

Shahnawaz Towheed. Photo via Queen’s University website.

Towheed, a medical student at McMaster University and MSc Epidemiology student in the Class of 2023 at Queen’s University, is passionate about psychodermatology. This is the study of the connection between the mind and skin.

“I’ve been researching the effects of vitiligo on diverse skin tones, and how the mental health burden can differ based on what your skin type could be,” Towheed explains.

”One of the major findings from my study was that patients with darker skin types according to the Fitzpatrick scale are much more likely to also be experiencing depression and anxiety… What stood out to me from that finding was how important it is for there to be culturally sensitive care in vitiligo, and also to make sure that mental health services are offered as soon as possible for patients.”

Vitiligo Voices Canada Logo. Image via Shahnawaz Towheed.

Towheed has had vitiligo since he was six years old and shared that, when he was young, he started to question whether he still belonged to his South Asian ethnic group.

“When it comes to skin tone, it’s so much more than what you see on the surface. A lot of us attribute our identity to just what we see in the mirror and at that young age, I was no different. Especially when everyone you see around you has a darker skin complexion, then you definitely think that it’s part of a bigger identity or it’s something that exists as a prerequisite to being part of a certain ethnic or racial group,” says Towheed.

“I started questioning whether I would still be accepted in my community. This is a really common story for a lot of people. It’s particularly challenging for people who lose all their complexion, like myself, because if you were to see someone like me on the street you would probably not be able to tell what my background is. People’s perceptions of me were a lot more important at that time than they are now… I think I can thank a lot of my family and friends’ support for that.”

Not only is it World Vitiligo Day on June 25, but June is Vitiligo Awareness Month. Vitiligo Voices Canada has been posting a new personal story by people with vitiligo almost every day on their Instagram page.

“It’s been a really transformative experience for a lot of people,” says Towheed. “We’re starting to see a greater effect such that other people are starting to tune in and learn a lot more about the condition”.

Towheed also mentions that Vitiligo Voices Canada plans to host virtual monthly support group sessions.

“We had our first one about a month and a half ago with several individuals including the four co-founders. We talked about our experiences with vitiligo and answered some questions amongst ourselves in a very casual and safe space. We do plan to have more of those kinds of social, support events for people with vitiligo. I would encourage people to the tune in to our page for the stories and that support group event when it comes out,” he shares.

Leave a Reply

You cannot copy content from this page, please share the link instead!