Jeremie's story

Cystic Fibrosis

Jeremie Saunders is one of Patient Voice’s 2024 “Rare Creators” — someone who is using their online platform to uplift the Canadian rare disease community. Jeremie is one of the hosts of the Sickboy podcast and a dedicated cystic fibrosis advocate who uses his platform to spark conversations about health and access to innovative rare disease medicines.

Halifax, Nova Scotia

When my friends and I first conceived of the Sickboy podcast — almost a decade ago — the idea wasn’t grandiose, it was simple: being sick sucks, but there’s a lot that’s funny about it, too. We should talk about it.

My own journey with cystic fibrosis (CF) had been full of pain and heartbreak, but also absurdity and beauty and laughter. I figured surely others, with other illnesses and health issues, shared that experience. But talking about illness was so stigmatized. Every time I tried to tell a funny story about CF, I could see how it made people uncomfortable, almost like the idea of my illness was so heavy on them that they couldn’t possibly laugh. So we created Sickboy in order to have a safe space where that laughter was possible, allowed, and encouraged.

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All these years — and a global pandemic — later, Sickboy is still that space. And it’s so much more. We get to talk to so many cool and interesting people, and it’s not just a platform for fart and dick jokes, but also for advocacy and education. But also for fart and dick jokes.

For a long time, when I was growing up, I had this sense of guilt that I wasn’t doing my part as a CF advocate. When Sickboy began, I literally could not have told you anything informative about my condition other than that it’s considered a lung disease. But through the dialogues the podcast has enabled, and through the research it’s inspired me to do, I’ve learned so much more than I even knew there was to learn. And I’ve become a strong advocate as a result — for CF and for myself, but also for other illnesses and other people. The simple act of giving people a space where they could talk openly about their story — the hard parts and the hilarious parts — turned out to be a more powerful form of advocacy than I could have imagined.

“I’ve become a strong advocate…for CF and for myself, but also for other illnesses and other people.” 

Getting to be part of this community we’ve built has broadened my own perspective many times, and the actual endeavour of the podcast has absolutely changed my life for the better. Don’t get me wrong, it’s a ton of work. We do three episodes of Sickboy every week now, not to mention all the other projects our studio — Snack Labs — works on. It requires a ton of discipline and routine to get it all done. This is not something I’d ever really had in my life before as a theatre school dropout and retired actor. But, thanks to this routine — and the dialled-in regimen of self-care I’ve incorporated into it — my health today is the best it’s ever been.

Of course, my good health is also thanks to groundbreaking new treatments targeting the underlying cause of CF. When I was first diagnosed, CF prognosis was grim, and treatment options focused mainly on managing symptoms. I lived much of my life with the expectation that I wouldn’t make it past 30. I had an expiry date. This year, I turned 36 and that still blows my mind. 

The breakthroughs in CF treatment have opened doors to beautiful possibilities that were once unthinkable. Living longer means discovering new ways to live. The idea of starting a family, which I had always considered an impossibility, is now a tangible dream. Of course, the prospect of suddenly having a future I never planned for can also be jarring. Let’s just say my bank account was under the impression it wouldn’t need to become a pension fund. But this just gives me greater drive to create, to succeed, and to push my limits. My approach to creativity has evolved. I feel emboldened to step out of my comfort zone, to experiment and explore new avenues in my work. 

The future is a fascinating place. I’ve always wanted to help create it, but I never thought I’d get to live in it. It’s thrilling to be wrong.”