In a world where people notice first and foremost how we look, vitiligo can be traumatic for people, especially those with a darker complexion.
Omar Sharife has spent almost 20 years of his life feeling self-conscious about the way he looks and concerned that he’s making others uncomfortable when he eats at a restaurant. Dining out became a trigger for anxiety that left him wiping the sweat from his brow while trying to enjoy a meal.
Now in his 40s, the Vancouver model and actor has been able to work through the insecurities of living with vitiligo, an autoimmune condition that causes skin to lose its pigment in patches when melanin-producing cells die or stop working. The patches can also be severely itchy for some.
Vitiligo might show up because of stress, over exposure to sun or chemicals, but the exact cause isn’t known.
And in a world where people notice first and foremost how we look, this skin condition can be life-altering and traumatic for people, especially those with a darker complexion like Sharife.
“Every year, I got a little more of it,” he says of the pigment loss that started with a heart-shaped spot on the middle of his forehead when he was 18. At that time, light-based treatments that were commonly used would burn and blister his skin and he’d wait for the skin layer to peel off, hoping for improvement. The one patch would be replaced by tiny dark spots. He used makeup to conceal the spots for a while, but then it appeared on the tips of his fingers and then his elbows.
“I was like, ‘well, that’s it. I’m never wearing a short sleeve shirt again. I’m done.’ So, I created rules so that I could feel comfortable, like wearing a long sleeve shirt. If I go to the gym, maybe wearing three-quarter length shorts rather than showing my knees and I just hoped that it wouldn’t keep spreading.”
About 0.5 to two per cent of the population has vitiligo, which can start at any age, but roughly half of people get it before age 20 and it starts before age 40 for 95 per cent of those affected.
Now Health Canada has approved Opzelura (ruxolitinib), a non-steroidal cream for topical treatment of vitiligo in adults and young patients 12 years of age and older. The cream has also been approved for mild to moderate atopic dermatitis in patients 12 and older who can’t adequately control it with conventional prescription therapies.
Topical problem solving for patients
Opzelura is a topical Janus Kinase (JAK) inhibitor, a drug that curbs your immune system. It works by turning off certain reactions inside cells that turn on inflammation. This can reduce itching and restore clear skin. JAK inhibitors are also prescribed for inflammatory conditions like rheumatoid arthritis and psoriatic arthritis.
Dr. Kim Papp, a board-certified dermatologist in Waterloo, Ont., is an atopic dermatitis expert who led the clinical trials that supported the Opzelura medication approval.
“The advantage of topical applications is that any safety concerns you might have are pretty well abolished when you have a topical agent because you’re getting very minimal systemic exposure. So your risk of any kind of drug-related adverse effect is minimized,” he explains. Drugs taken orally for these skin conditions can increase overall cholesterol levels and put patients at risk for cardiovascular problems, herpes or even shingles. Chronic use of steroids can make skin thinner and more fragile, so it’s more easily bruised or torn, Papp says, noting that steroids can be addictive and difficult to get patients off the steroid treatment because of profound withdrawals.
“The atopics actually have a miserable life mostly because they’re driven mad by itch,” Dr. Papp says. “If you think about it, one mosquito bite is a nuisance, 100 mosquito bites is more than annoying, and now you look at 1,000 mosquito bites and not just for a few days. You’re looking at weeks, months, maybe years on end.”
Patients are often sleep-deprived which can lead to altered mood over time, making them more susceptible to anxiety and depression.
“One of the big advantages of JAK inhibitors in topical creams specifically is that they turn off that itch remarkably fast, within hours. It’s incredible. Patients will say, ‘this is amazing. This is fantastic. I don’t itch anymore,” Dr. Papp adds.
He says JAK inhibitors have proven effectiveness for a broad array of inflammatory conditions, and what’s revolutionary for dermatologists is having a topical treatment. “This potentially expands the repertoire of conditions and skin diseases that we can treat, some of which may be steroid responses, some of which are somewhat steroid resistant but may respond to the use of the topical JAKs because of the pathways that are involved.”
Papp had a number of patients in both the vitiligo and atopic dermatitis studies that are structured with an active group on the cream and a placebo group to compare both the effectiveness and safety.
“We saw very rapid response and patients showing remarkable clinical improvement,” he says, adding results are as fast or faster than steroids and more complete in terms of maintaining results. “The other advantage is that you can use it basically almost ad lib so if you need to apply it to an arm or a leg or your face several times a day you can do that. You can use it every day for weeks if necessary.”
“JAK inhibitors just have you know, theoretically and actually demonstrably a broad array of inflammatory conditions that they can address.”
Finding support and advocating for vitiligo
“It’s still something that people don’t necessarily understand. In the medical field, it’s considered a cosmetic issue rather than a mental health issue,” Sharife says. The mental health impact is significant, from self-esteem issues that derail your career to hurdles with physical intimacy.
“Intimate relationships depending on where vitiligo spreads on your body can be really challenging for people,” he adds.
“I have it quite extensively. I’m loving it and appreciating it now, but I’ve gone through the long journey to get to where I am. There are people who have literally one little spot, not even visible to anybody else, but their world is broken because of it because they don’t know what to do.”
He’s also buoyed by the approval of Opzelura for Canadians who are looking for treatments that are safe and effective. New tools, along with finding community and support, are interventions that he wants to share with others. Because it is a challenging journey.
“You have to evaluate yourself and your self-worth much more than somebody else does, because your insecurities are on display. It means you need to pick yourself apart piece by piece and put yourself back together in a way that other people could never relate to. And what it’s given me personally is more value and more determination to be who I am and do what I do.”