It’s called the disease of a thousand faces because it affects people differently.

It can happen at any time to anyone of any age, but research shows that people of colour — specifically women of colour — are at greater risk of getting lupus.

Not only is systemic lupus more common in racialized communities, BIPOC women can have more severe lupus compared to non-BIPOC women.

Michelle Gazze, a Winnipeg woman whose family came from Guyana, was diagnosed with lupus six years ago at age 30.

She shared her story leading up to World Lupus Day, on May 10. She wants to educate members of racialized communities to result in earlier diagnosis and treatment of the disease.

Before being diagnosed, she was community relations manager for True North Sports and Entertainment. The job was fast-paced and the hours were long, but she loved her work.

Given her hectic schedule, Gazze didn’t think much about feeling tired. Over time, other symptoms started to appear. Her joints, hands and feet started to swell and she would get dizzy and experience bouts of brain fog.

She’d become short of breath for no reason.

“I was working a lot of events and I thought, I’m just tired. Everyone’s tired,” she reasoned. “But then it got to the point where the shortness of breath was starting to scare me, and I couldn’t even go down a flight of stairs properly.”

She went to her family doctor, who ran some tests and referred her to a rheumatologist. While she waited to see a specialist, Gazze continued to work, popping Advil regularly to manage the pain and inflammation.

One night, after a Winnipeg Jets draft party, Gazze’s symptoms got increasingly worse. She remembers being short of breath and not being able to walk because she couldn’t feel her feet.

“I was in so much pain — it was like a lot of flu-like symptoms and my body was just shutting down,” she said.

She hoped to sleep off the symptoms. Her partner at the time convinced her to go to the hospital.

“I went to the emergency room, and they were like, ‘thank God you came when you did,’ my hemoglobin had dropped to 47, and the average for a woman my age was in the 120s,” she explained.

“If I had gone to sleep that day, they told me that I may not have woken up.”

Gazze underwent several tests and remained at the hospital for about a week, where she had an emergency blood transfusion.

Her results showed she had lupus, an autoimmune disease that occurs when the body’s immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different body systems — including joints, skin, kidneys, blood cells, brain, heart and lungs.

Symptoms are different in each person, and there is no single regimented treatment plan.

“I had never even heard of the disease,” she said.

Gazze researched everything she could about the disease. The information was scarce, though she was stunned to discover that lupus — the “disease of a thousand faces” as they call it, affects women of colour (like herself) at a higher rate than white women.

“For women who are Black, South Asian, Indigenous, and women of colour, lupus is two to three times more prevalent in our communities,” explained Gazze.

Dr. Christine Peschken, a rheumatologist, said Lupus is more frequent and often more severe in non-white groups.

She said there is a genetic predisposition to lupus.

“It’s a whole bunch of genes that sort of add a little bit and those genes are different in different people, and that’s what makes lupus look quite different from one person to the other,” she said.

“Some of those genes historically relate to particularly fighting viruses and so they may be more prevalent in people, depending on their origin.”

In addition, environmental and social circumstances can trigger those genes to flip over from fighting infections to facilitating an autoimmune disease such as lupus.

“One of the biggest environmental triggers is chronic stress, and we’re talking more about population stressors. For instance, for the Indigenous population, colonization and residential school, that whole population stressor plays a big role in promoting inflation and allowing lupus in a genetically predisposed individual to develop.”

Leanne Mielczarek, executive director of Lupus Canada, said that while Canadian statistics and research is hard to come by, a pediatric study from 2012 to 2013 shows that childhood onset of lupus was more frequent and severe in non-white children.

“With it being like an invisible disease to folks, there can be quite a mental health component to it. You know, trying to explain to people that you’re living with this disease, depending on the person and the organ involvement, it can be very, very difficult to navigate everyday life,” Mielczarek said.

It can take up to seven years for someone to be diagnosed with lupus.

Gazze manages flareups as best she can. She has changed her lifestyle and uses both a traditional and natural approach to her health care.

She has connected with other young women who have lupus and leans on her strong faith and the power of prayer.

She has learned to navigate the health-care system by advocating for herself and trying to ask the right questions to care providers.

She said her diagnosis has redefined what being healthy looks like for her.

She can no longer do circuit training and strength training, so she focuses on mobility and movement through restorative yoga and pilates.

“Part of the healing is redefining what healthy looks like for you,” she explained.

“Back in the day maybe healthy for me was wanting to have a flat stomach or working out because I was going on a trip or something. Now healthy to me is having the energy to be present with the people that I love and to do the things that I love to do.”

Around this time last year, Gazze had a setback: she was diagnosed with kidney disease after a terrible lupus flareup.

It was the sickest she has been since her diagnosis. She was given kidney infusion treatments, heavy medication, and she was forced to press pause on her life.

While there is no cure, people with lupus can experience remission with proper care.

“I’m in a much better place today and medically my doctors have shared that my recovery into remission was basically not expected,” she said. “I am thankful that with a lot of prayer, support, discipline and information, I was able to survive.”

Gazze said she hopes to encourage others to educate themselves on early diagnosis and treatment of the disease.

She encourages those with the means to consider donating to Lupus Canada to fund research.

For more information, go to www.lupuscanada.org.

shelley.cook@freepress.mb.ca

Twitter @ShelleyACook