Manitoba

Comfortable in the skin you are in: Winnipegger forges online vitiligo community

Many teenagers struggle with body issues but when Christiana Jones was 16 she was diagnosed with a rare skin disorder.

Christiana Jones was 16 when she was diagnosed with the rare skin disorder

Christiana Jones has created a website to help people with vitiligo be body positive. (Submitted to CBC)

Many teenagers struggle with body issues, but when Christiana Jones was 16 she was diagnosed with a rare skin disorder.

Now the Winnipeg woman has started a website to build an online community, like she wished she had when she was a teen, to help other people diagnosed with vitiligo. 

"No one should feel uncomfortable about the skin that they are in," Jones said.

Vitiligo is a skin disease that causes the pigment-producing cells in the body to stop working, resulting in blotches or patches of white skin.

Jones said there is not a lot of research around the disease or what causes it since it only impacts about one per cent of people.

Model Winnie Harlow on the red carpet at the MuchMusic Video Awards (MMVA) in Toronto, June 15, 2014. REUTERS/Mark Blinch (Mark Blinch/Reuters)
Most people know about vitiligo through Michael Jackson, who revealed he had it during an interview with Oprah Winfrey in 1993. Canadian model Chantelle Brown-Young, also known as Winnie Harlow, is also well known for being a vitiligo spokesmodel.

However, when Jones was growing up she said it was difficult finding people to talk to about what she was going through.

"A lot of people who have it end up going through a bit of a depressive spell once they've been diagnosed because it is a big change in appearance," she said.

The splotches started on her chest but began to spread. Jones said it has actually covered her whole face now. To understand the changes, doctors recommended meeting other people with the condition.

"The issue with that though was I didn't know anyone who had vitiligo," she said.

Christiana Jones shows the pigment changes on her arm. (Submitted to CBC)
Jones found a couple of websites online but she said they only talked about experimental treatments and felt negative. She wanted something that made people feel comfortable and happy with their bodies.

"It would have helped a lot just to have that positive experience," she said.

That's why she started the page Spotlight Vitiligo to create an interactive online community fostering a "healthy body image."

"I wanted to create a space that's really positive and more focused on body positivity and helping people come to terms with their body image," she said.

Jones said she is looking for people to join the community and contribute to an awareness video.