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living front and centre to change the conversation around diabetes
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stephanie atkinson (left) competed as a finalist in the miss universe canada pageant last summer where she showed off her diabetes monitoring devices, and mason dos anjos (far right) takes part in fashion shows to show off his style and insulin pump.
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this article was produced by the healthing editorial team with the support of a grant from diabetes canada. while diabetes canada made the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
stephanie atkinson is a size 10 beauty pageant finalist with a big smile, warm personality and wearable devices for her type 1 diabetes. she’s among the brave who are speaking out about living with type 1 diabetes, aiming to break through stigma that somehow this complex autoimmune disorder is their fault.
she proudly made sure her tech devices were visible in her competition outfits for the miss universe canada crown last summer with about three million viewers watching the broadcast.
“i had a bedazzled arm,” she laughs, of the diabetes monitor that caught the attention of judges and viewers. “there’s just so many misconceptions about what diabetes is. i obviously am representing as a woman at age 35, a mom, this and that. so there’s just multiple things going on and a lot of people are like, ‘oh, you need to eat cinnamon’ or ‘let me give you this book so you can heal your diabetes.’ it was just becoming so overwhelming with the makeup artist, all the staff, one after another commenting because people don’t know what these medical devices are. i kept explaining, explaining, explaining.”
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the stress put her blood sugar out of range and she almost decided not to go ahead with the pageant, until her husband and other contestants urged her to continue.
on another stage last june, mason dos anjos, now 12 and in grade 7, participated in a diabetes canada pump couture fashion show, walking the catwalk with others who live with diabetes.
“he actually walked out, took his insulin pump out, was showing everybody and he was proud of it,” says his mom miriam, who remembers her tears when it happened. “i lost it,” she explains, adding that for a long time her son wanted to wear long sleeves to keep his tech hidden.
because of bullying at his school, like taunts of “go cry about your diabetes” or “you ate too much sugar,” and lack of awareness, he’s done presentations about type 1 diabetes for classes and school assemblies. he’s also found a group of supportive friends who will notice if he’s not doing well and offer their help.
“it’s really important because it’s like stepping out of my bubble,” mason says of the fashion show where he held out his pump device so everyone could see what living with type 1 diabetes is like. “i kind of felt included. i was with people that go through the same thing on a daily basis. so it just felt like i had a conversation-starter because you go through the same thing every day.” he’ll be back at the event in toronto this coming june, looking forward to modelling on the runway after preparations in hair and wardrobe. “maybe a haircut next time.”
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these are just two examples of people living with diabetes who want to educate others for the benefit of everyone living with diabetes in canada.
different journeys, same challenges with type 1 diabetes
while they have very different journeys, they share the common theme of managing this life-changing condition day in and day out.
stephanie grew up in the small community of dollard-des-ormeaux, a suburb of montreal, where she always felt like an outsider. “i was bullied as a young child. i grew up in a predominantly white neighbourhood. i was the first biracial child ever born at my hospital.”
as a young kid, she recalls writing on a piece of paper that posed the question, ‘what do you want to do when you grow up?’ her response back then set the path forward: “i want to make all women feel beautiful. and i took that into my career. it’s great because everyone deserves to feel beautiful at any age, any shape, any shade. so that’s what i do.” the former montreal model is an esthetician with her own skincare company.
she also had a wonderful multi-generational family at home who helped instill confidence and support her through the difficult times, including the trauma of her uncle, who struggled with type 1 diabetes. his condition impacted her home life in many ways, and her parents moved the family to boston, where they both studied at harvard university and became immunologists. she says their research focused on immune disorders, influenced by her uncle’s life.
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and after a near-death experience from diabetic ketoacidosis, triggered by undiagnosed diabetes, a hospital doctor explained that she had type 1 diabetes and would require lifelong insulin, the hormone that powers body functions. the pancreas, responsible for producing insulin, doesn’t work as it should. stephanie was days away from her 30th birthday when she got the news: “you were about 30 minutes from dying if we did not give you the insulin,” she was told.
diabetes is a complex condition that changes people, putting them in the driver’s seat of survival—which is one way to describe it, she says. “your job now is a 24/7 pancreas. so people are living every day and you’re trying not to die every day. that’s literally living with type 1, so we’re on auto here trying to keep ourselves going.”
for mason, living with type 1 diabetes is all he remembers. he was diagnosed at 16 months and now has a nurse with him at his school in aurora, ont., because he doesn’t feel the effects of a dangerously low blood sugar that others often feel. while his continuous glucose monitoring system sounds an alarm when his blood sugar level drops, it’s become “white noise” to him. he doesn’t hear it or react by consuming sugar to get the level back up to the safe range (although the kit he carries with him at all times has emergency sugar items).
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he loves playing sports, especially football and basketball, but again won’t recognize when his blood sugar is dropping and he needs to sit on the sidelines with a juice box. his good friends are now on alert to help out and make sure he’s okay. it’s all high stakes for family members like his mom, who worries.
“he was having a really bad low and he was sitting down,” miriam says of just one example of living with the unexpected in type 1 diabetes. “it was at the school drop-off and i was with him and he was crying and all of his friends were running around. instead of kids running around and joking, two of his friends stopped and said, ‘mason, are you ok? do we need to get you juice?’ so they knew. it’s the awareness piece that’s so important.”
as mason sums it up, taking it all in stride: “it’s a day-to-day basis. you know, over time, you get used to it. you start to learn and develop how to have carbs or see how much insulin you have to give yourself.”
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