'So much hope': New medication for Albertans living with rare skin condition

Alia Azim, seated, is examined by her dermatologist Dr. Vim Prajapati, who says a newly approved drug could help treat her rare skin disorder.

Albertans living with an autoimmune disease that causes the discoloration and depigmentation of skin now have a new sense of hope after Health Canada approved a breakthrough topical medication.

"There's really never been anything to treat it," said Alia Azim, a Calgary woman who lives with nonsegmental vitiligo.

"I've seen dermatologists over the years and there hasn't been a ton of research, so I was kind of giving up."

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Azim was diagnosed with the rare condition as a teenager when she noticed the skin on her hands was becoming discoloured and splotchy.

For the past 30 years she's struggled with the disorder and there has never been an effective treatment option.

"When you're in the sun, the white patches burn really fast, so it took some time to get used to and it was a struggle at first. I had to learn to be resilient," she said.

"But now this new treatment is very exciting, and it gives me so much hope."

On Oct. 16., Health Canada gave the green light to ruxolitinib, known by its brand name Opzelura.

The topical cream medication had been available in the United States for the past two years and yielded incredibly positive results before it finally got the green light north of the border.

The medication is expected to be available through prescriptions from licensed dermatologists or allergists later this month and can also be used to treat eczema or atopic dermatitis.

Calgary dermatologist and co-founder of the Dermatology Research Institute. Dr. Vim Prajapati worked on the clinical trials says the new remedy can only be described as a "complete breakthrough" for his patients.

"Many of our patients had significant improvements including instances of 50 per cent to 75 or even 90 per cent regimentation of their skin," he said.

Prajapati says vitiligo affects a very small percentage of the population, but it can have a huge impact on the lives of those that suffer from it.

"It can really have a significant impact on quality of life, mental health, anxiety, depression, suicidality and stigmatization, as well as career advancement so this really is an historic milestone," he said.

How does the medication work?

The depigmentation of skin that results in patchy loss of skin colour when one is diagnosed with vitiligo is caused primarily from the progressive destruction of pigment-producing cells known as melanocytes.

Dr. Kim Papp, a board-certified dermatologist and president of Probity Medical Research explains that the body has a natural system called the JAK-STAT pathway that comes into play with these types of inflammatory and immune diseases.

When the molecule part of this normal inflammatory pathway is 'revved up' more than they should be, it can cause increased inflammation.

"So, this cream is applied twice daily to the affected area. The medication enters the skin and interferes with the immune signals that are directing the abnormal or aberrant cells," he said.

"This is purely based on observation that myself and others have made, but we also use some exposure to sunlight or controlled ultraviolet light therapeutically to enhance this re-pigmentation process."

Papp led the clinical trials that supported the Opzelura medication approval, adding that the results from clinical trials he had conducted with patients have come with a wave of positive feedback.

"I don't know how many dozen patients have been calling me almost every month asking, 'When this was going to be ready? When's it going to be available? When's it coming to Canada?'

"So, you might see I'm a bit thin in the hair because I've been pulling it out over how frustrating this has been, but now it's finally here and there are a lot of happy faces."

Cultural impacts of vitiligo

Perhaps the most famous individual diagnosed with vitiligo was Michael Jackson, who noticeably had white patches on his skin and suffered from sensitivity to sunlight.

In a 1993 interview with Oprah Winfrey, Jackson denied rumours that he was bleaching his skin and said he wasn't trying to be anything he was not.

"I have a skin disorder that destroys the pigmentation of the skin, it's something I cannot help," he told Winfrey.

"But when people make up stories that I don't want to be who I am, it hurts me. It's a problem for me, I can't control it."

Jackon's story illustrates why the cultural impact of vitiligo can be "quite profound" and that the disease goes deeper than just the skin, Prajapati said.

"People from different racial and ethnic groups can actually have a loss of identity and even a sense of belonging, and so there are misbeliefs out there that vitiligo can be associated with somebody being contagious, cursed or impaired, none of this is true," he said.

"So I think it's important for us to realize that patients with vitiligo can suffer a lot and it's important to ask those questions as a health-care provider."