Psoriasis has made life hell for Brenda Spinozzi.
Diagnosed with the chronic, autoimmune skin condition when she was five, Spinozzi, a pharmacy technician in Sarnia, Ontario, has spent her life hiding the itchy, scaly lesions that, at times, covered 90 per cent of her body.
“Despair is what I felt even though I tried to always remain upbeat in front of others,” she says. “I went to great lengths to make sure no one could tell I had such a severe condition.”
According to the Canadian Psoriasis Network, psoriasis affects over a million Canadians, with 90 per cent having plaque psoriasis, which causes dry, raised, red skin patches covered with silvery scales. They may be itchy or tender, and usually appear on elbows, knees, lower back and scalp. Less common types of psoriasis include guttate, inverse, pustalar and erythrodermic psoriasis, all varying in severity and appearance.
“Sometimes it was hard to hide my psoriasis — and the stares or dirty looks from the public made me feel like a leper,” says Spinozzi.
Spinozzi, now married with two children, says that she’s taken numerous drugs over her life, some with dangerous side effects such as liver and kidney damage. It’s only in the past several years that she has been prescribed biologic medications — produced from living organisms, like vaccines — which have cleared her severe plaque psoriasis by 80 per cent. Biologics target parts of the immune system that cause psoriasis.
“I can finally work without pain, wear what I want, take a trip south, power walk and bike to keep in shape, and wear a bathing suit to the beach,” she says. “I even went skydiving for my fiftieth birthday.”
Though it’s a skin disease that affects one million Canadians of all ages, psoriasis is also a condition that often has a profound emotional impact. Many people with psoriasis are embarrassed about their appearance, and go to great lengths to hide the silvery or reddish scales that peel away from their hands, elbows, knees or scalp. They often seek mental health support as they attempt to handle a condition that can flare up at any time — be it in cooler weather or during times of stress — and take months to years to get under control.
“There’s a lot of embarrassment,” says Dr. Neil Schear, Head of Dermatology at Sunnybrook Hospital in Toronto. “I always ask my patients: ‘What bothers you the most?’” he says.
Schear says many patients focus on their scalp and hands, two areas which are visible to others and elicit the greatest number of negative reactions. He says that many patients say that people stare at them or recoil when they go to shake their hand. The end result is that patients hide their condition. “You’re going to Starbucks and you’re wearing gloves,” he says.
In addition to the shame associated with the condition, Schear says many patients also suffer from anxiety and depression. “One guy with psoriasis would never leave his house,” he says.
In a study posted in the Journal of the American Academy of Dermatology, researchers found that people with psoriasis have a “significantly higher likelihood of suicidal ideation, suicide attempts, and completed suicides.” An older study posted on the JAMA Network reflects similar findings. “Patients with psoriasis have an increased risk of depression, anxiety, and suicidality,” they write estimating that, in the United Kingdom, psoriasis can be linked to more than 10,400 diagnoses of depression, 7,100 diagnoses of anxiety, and 350 diagnoses of suicidality each year.
“Over the years the emotional effect takes a toll,” says Spinozzi. “I would get worn out and sometimes feel depressed but tried to keep things as normal as I could.” She says she feels lucky that her husband saw past her psoriasis and supported her, as have her children. “Having caring people in your life who are educated about psoriasis is so important and gives you the emotional support needed to try and live as normal a life as possible.”
The Canadian Psoriasis Network also suggests people who have psoriasis talk to their doctor about any psychological issues they’re facing. “It is important to let your primary care provider or dermatologist know about any emotional or psychological difficulties you may be having,” it recommends.
Spinozzi says that new treatment options — like biologics — have been a game-changer, helping her skin clear up and, get into remission, and allow her to have a normal life.
Schear agrees that biologics have had a big impact, adding that patients most patients, “70 to 80 per cent — can get clear.”
He says in addition to this new class of drugs, topicals can also help. He cites one new Canadian-made cream, DUOBRII, a combination of halobetasol propionate and tazarotene, which treats adults with moderate to severe plaque psoriasis. “It’s a really great lotion to get the inflammation under control,” he says.
Schear also recommends phototherapy or light therapy, which involves exposing the skin to ultraviolet light on a regular basis. Treatments can be done in a hospital setting or at home via a home-use therapeutic light.
The treatment landscape has changed dramatically for patients in the last decade, he says. “Three out of four people could be helped by the therapeutic options we have now.”
Spinozzi agrees, highlighting the importance of finding a healthcare provider that understands the challenges of living with psoriasis “You need to find someone who will listen to you and answer your questions,” she says. “Acquire the right dermatologist and work together towards your freedom from psoriasis.”
Other treatment measures include naturopathy, medical cannabis, yoga and support groups.
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