What is vitiligo, and who is likely to develop it?

Toronto model Winnie Harlow has been described as the fashion industry’s next It Girl: she has appeared in Vogue magazine and on the runways during this year’s London Fashion Week, and was featured in Diesel’s spring/summer 2015 campaign. It’s remarkable stuff for a woman who was bullied relentlessly and cruelly labelled things like “cow” growing up because of having the same skin condition that Michael Jackson brought into the public eye.

That condition is called vitiligo (pronounced vittle-EYE-go) and it occurs when cells that produce melanin, the pigment that determines the colour of skin, die or stop functioning. It results in the loss of skin colour in patches. While Harlow is being celebrated for her distinctive look, it’s been a long road to success.

“Bullying on any level can cause a person of any age to feel many negative emotions toward themselves, and in my case, it was so bad I was forced to decide to drop out of school,” Harlow tells Yahoo Canada in an email from Europe, where she’s working. “Once I dropped out of school, I was able to focus on myself. I would compliment and love myself more and more each day once I removed the negative vibes away from me.”

Harlow, who also goes by Chantelle Winnie, never planned on being a vitiligo spokesmodel, but it’s a role she has embraced.

“Becoming a person that speaks out against social issue was something that happened through me simply being myself and honest,” says the former “America’s Next Top Model”contestant. “One thing I would like for people to stop doing is referring to vitiligo as a ‘suffering’ disorder. Just because my skin is different does not mean I am suffering in any way.”

Who develops vitiligo?

The condition occurs in men and women of all races, though it’s more noticeable in people with darker skin. There are different types: segmental vitiligo describes depigmentation in only one or a few limited areas of the body; generalized vitiligo most often has bilateral characteristics, meaning if it appears on one elbow, it appears on the other elbow around the same time.

Vitiligo affects approximately one per cent of the population, according to Vitiligo Support International (VSI), a non-profit organization based in Lynchburg, Virginia. It’s considered an auto-immune disease, meaning the body’s immune system sees the person’s own pigment cells as foreign bodies and attacks them. Vitiligo also tends to be associated with other autoimmune diseases, such as hyper- or hypo-thyroidism, diabetes, and pernicious anemia.

“It’s really important to see a dermatologist to a) ensure it is vitiligo, and b) to screen as appropriate for associated medical conditions,” says Shannon Humphrey, a cosmetic dermatologist at Vancouver’s Carruthers & Humphrey and director of continuing medical education in the department of dermatology and skin science at the University of British Columbia. “It’s not something that will affect life expectancy, but of course it can have an effect on quality of life based on self-image and based on social stigmatization.”

Vitiligo can start at any age, but about half of those with vitiligo develop it before age 20 and about 95 per cent before age 40, according to VSI. Although about 20 per cent of people with vitiligo have a family member with the same condition, only five to seven per cent of children who have a parent with vitiligo will go on to develop it themselves. The skin texture is normal. It’s not contagious but it affects everyone differently.

“One of the challenges in teaching and counselling patients about vitiligo is that the natural history is really variable,” Humphrey says. “One patient may have a couple patches that slowly repigment over several months whereas many others have patches that are progressive and spread to involve larger surface areas of body and perhaps never repigment. What’s difficult for us as doctors is we can’t really predict which patients will be in which category.”

No ‘cure’ for the condition

Treatments are inconsistent in their efficacy. Humphrey says there’s a reason that dozens of vitiligo therapies show up on a web search: because none has been proven to work every time.

“Like warts, vitiligo has a number of treatments that have been tried but with really inconsistent efficacy.”

Treatments include topical creams, with or without steroids; phototherapy; and surgery, one form of which involves transplanting healthy melanocytes, those cells that produce melanin, to affected areas.

People have also tried everything from Ayurvedic treatments to homeopathy, to limited or zero effect. More promising is research into treatments based on the sequencing of the human genome.

Another option is no treatment, which may mean looking to people like Harlow who have come to a place of not just accepting their differences but celebrating them.