©Photo Shanny 2021
I raise awareness, educate and advocate for people living with rare and invisible illness, living with a few rare diseases myself.
I mostly do this as a patient partner, public speaker and through my website: Ma vie de zèbre (My Zebra Life).
I launched Ma vie de zèbre in 2013 because I wanted to share Québec-pertinent information on Ehlers-Danlos syndromes, in French, as I had a hard time finding that myself.
It was the only Québec resource in French at the time, and sadly is still one of the only ones.
Now also living with adrenal insufficiency, an autoinflammatory disease and a few other rare and invisible comorbidities, I also talk about those topics on my website as well as on social media, where I’m very active.
Since May 2021, I dedicate all my time and energy on raising awareness and being a patient partner.
Until then, I was a translator and editor (in French and in English) and before that, worked many years in show business (mostly behind the scenes).
Be it to raise awareness or advocate for the rights of people living with rare and invisible illness, I regularly give interviews (TV, radio, newspapers, web) on top of writing op-eds and articles, and have been doing so for more than a decade.
I’ve been actively involved in associations and political boards in the 2000s, including in student politics, being co-founder and vice-president of the AFESH-UQAM in 2001, among other things.
I’ve been a foster mom to a few SPCA animals and was a “Pambassador“—Giant Panda Ambassador—in 2010 in China. That’s where I got a lot better at public speaking!
I’ve been a member of the COVID-STOP collective since 2021 and participated in the creation of Protect Our Province Québec.
With my dozen diagnoses and as many specialists, I have a strong experience in the health system, under different angles. Having worked at Ste-Justine’s hospital for five years while I was studying, and having a few friends who are healthcare professionals, I also understand “the other side” of things.
As a patient partner, I’m involved in many projects where I help create or change policies, co-create surveys, decide priorities. I collaborate in the writing of academic papers, participate in future healthcare professionals’ education, and much more.
My bachelor’s degree in psychology gave me a solid base in research methodology and in biology, which is very useful when you’re living with rare diseases. My academic reading as well as the numerous webinars, conferences and symposiums I attended make me an expert patient on Ehlers-Danlos syndromes, but also on most of my other conditions.
Rounding up my eclectic background are studies in Arts and literature and in event production.
My atypical life experiences give me a different outlook on life which I love to share with people and which, I hope, can inspire. My motto is that life’s obstacles are not obstacles to happiness!
Don’t be shy, contact me!