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 always loved writing, and I've been writing regularly for many years now to raise awareness about rare and invisible disease.
I really enjoy this more creative aspect of my work!
I wrote over 300 articles since 2013 for Ma vie de zèbre (My Zebra Life).
In 2021, one of my texts was published in a book for the first time (Chronically Empowered)!
A patient partner is someone who has experience with healthcare services, usually an expert of their own condition and who collaborates with businesses, healthcare institutions, organizations or researchers, to make sure there is "nothing about us without us."It's also sharing your experiential knowledge to improve a project or future healthcare workers' education.
Not all of the projects I take part in are paid. With the volunteer projects, continuous education and my website taking a lot of my time (Ma vie de zèbre—My Zebra Life and development, in fact, cost me money!), I set up a few ways to help me financially.