Yann's Story

Meet Yann, the co-founder of Twisted Talk, based in Montreal. Here is his story on his battle with Dystonia.

"I was diagnosed with dystonia in October 2017. I had started to experience my symptoms a few months earlier, and at that time no one was able to confirm what my strange painful condition was.

After I finally heard the word dystonia my head was spinning, I wasn`t too sure what to think about my diagnosis. It was a combination of relief, knowing that I knew what I had - and also sadness, knowing that from now on everything would be different. Soon after, I went to a francophone group meeting in Quebec. It was nice to see other people with my condition and it was a nice opportunity to get to know more about dystonia. Soon after the Leader of the French group mentioned that they were looking for someone to start an English support group in Montreal.

I got in touch with DMRF and I found out that there was another person (Jade) who wanted to start a group as well. Together Jade and I came up with the idea of Twisted Talk. We started to work together to reach out to Anglophone people in Montreal who have dystonia.

At first, it was a challenge to reach the Anglophone population in Montreal with dystonia. But soon I started to hear from patients with dystonia. All people with different stories, some who had just recently been diagnosed, some who had never been diagnosed and didn’t know what to do, and some who had been living with dystonia for years. As of today, we are a small group, but I am glad that Jade and I worked with DMRF to make Twisted Talk happen. I have met extraordinary people and we have helped some to see the right specialist in Montreal. It's really rewarding to give back in that way.

My advice for others who have dystonia? It takes bad days to have good days, don’t be ashamed of what you have, and do everything you can do to get better. Every day we fight, and this is what makes us dystonia warriors."

To learn more about Twisted Talk and upcoming events, email: twistedtalkmontreal@gmail.com

Last update: Mar 2021