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No Retreat for Outspoken Canadian
Name: Shaun Bernstein
Hometown: Toronto, Canada
While establishing a foothold in the Canadian newspaper industry, Toronto native Shaun Bernstein is also on a mission to fundamentally change the way hemophilia organizations support children and young adults with bleeding disorders.
The outspoken 22-year-old believes that too many kids with hemophilia are unnecessarily isolated.
At the heart of the problem?
According to Bernstein, initiatives such as wilderness retreats and summer camps are great for kids who are active and sociable. But for those who are shy or who, for health reasons, are less able to take part in outdoor activities—a silent population that potentially needs the most support—opportunities to network with peers are strictly limited.
Born with severe hemophilia, Bernstein has been on treatment since he was 3 years old. He was diagnosed with fibromyalgia—a condition usually observed only in much older people—when he was just 8. The condition added a layer of symptoms, from gastrointestinal issues to fatigue, on top of the pain, joint damage, ruined veins and enduring bleeds caused by his hemophilia. By the time he was 15 he was undergoing intense physiotherapy and could barely move.
Understandably, the boisterous life of outdoor camps, accessible to those with mild or even moderate hemophilia, seemed off limits to him as a child. “I didn’t go to camp because I wasn’t able to spend the weekend canoeing,” he says. “It was partly my own fault, but it was also due to programming that didn’t speak to me.”
This gap between what he calls the active and passive members of the hemophilia community only widens over time because hemophilia associations are populated by people who have been engaged in hemophilia networks from a young age.
He is now urging organizations such as the Toronto and Central Ontario Region (TCOR) chapter of Hemophilia Ontario to embrace social media platforms that can give all young patients the opportunity to share experiences and build relationships.
This inclination to advocacy isn’t new to Bernstein. When he was 18 he lobbied the Hospital for Sick Children in Toronto to set up a program that would help kids as they move from pediatric to adult care. “When I transitioned from the children’s hospital to the adult facility there was no infrastructure in place,” he says. The hospital eventually embraced suggestions from Bernstein and others, and the program is now the national model.
Figuring it out on his own
In the absence of a peer group, but with the unwavering support of his family, Bernstein learned over time how to reconcile debilitating hemophilia with school life, and later with work and a journalistic apprenticeship.
He is, however, the first to admit that he’s far from the perfect patient. He doesn’t carry factor with him at all times, for example.
“I probably should,” he says, “but I don’t.”
He attributes this “partly to laziness,” partly to an unwillingness to admit to himself the severity of his condition. For the same reason he didn’t keep diaries of his condition until three years ago. Not that he has ever been irresponsible with his treatment, he adds; it was “just a small form of conscious denial, and as a coping strategy it worked.”
Bernstein has, however, learned his lessons when it’s mattered most. He advises anyone at school or college to register with their disability services center to avoid potential problems in the event that their condition interferes with their coursework, for example.
“Registration is a valuable preventative measure,” he says. He was grateful for having taken the precaution when, partially incapacitated with a bleed, he was stumped in his efforts to take an important exam by an out-of-service elevator. “Full disclosure about your condition with your college helps smooth your way in that kind of situation,” he says.
The workplace dilemma
His first forays into the working world also gave him experience that would shape his view of the life to come. In the summer of 2008 he took a job as a guide on a tour bus, and he wrestled with a common dilemma for guys with hemophilia—whether or not to tell his boss about his condition.
He chose not to when he was hired, but eventually was forced to when his ability to perform his full duties at work was impacted by a severe bleed and immobility. “It was a lengthy injury. It created a headache for them, and there were a few complaints,” he says.
“It taught me a lesson. I don’t tend to think of my limitations, but those limitations are there and you have to be aware of them,” he adds. “What do I want to do with my life, and what can I do with my life? It’s why print journalism is such a good fit for me—I can do it from anywhere. I’m a bit worried about broadcast, for example, which would involve running around a control room.”
Nutritional changes and more time spent at the gym made a key difference. Physical exercise is hampered by an ankle injury he describes as “semi-permanent,” while his bleed recovery time is longer today than ever before—partly as a result of his large frame.
Having completed his bachelor’s degree in English and History in 2009, Bernstein enrolled at Toronto’s Humber College to study journalism. While completing that course, he’s expanding his writing portfolio and aspires to a career in political journalism. Meanwhile, his day-to-day assignments are leading him down some unexpected paths, including an exposé of dubious practices in the Toronto embalming industry.
And now he gets to combine his activism with his vocation: TCOR has asked him to serve as youth editor of the chapter’s new newsletter, with a specific remit to ensure that the publication speaks directly to the concerns of young people. “We want to bring a youth voice to the magazine, making it relevant to the community and bringing applicable, hands-on information that people can use,” he says.
In Bernstein it appears his local chapter has found an articulate advocate with the awareness and passion to get the job done.