A few weeks ago, CanPKU members contacted me to participate as a speaker in the PKU Québec day, which was held on October 26th in Quebec City. I obviously accepted with eagerness… then, I began to think. What was I going to talk about? I am not a scientist, I do not test new products, I am an ordinary guy who has phenylketonuria and who shares his experience through his communication skills and social media. So, I decided to keep it simple and to continue the mission I had with Phenylcetonurie Quebec, that is to talk about my experience with phenylketonuria. So I had to talk about myself in a conference… at length.
It was a challenge because I do not particularly like to talk about me or be in the spotlight. But I started to work and I quickly found the thread of my presentation. For me, phenylketonuria should not be considered a disease (although it is one) in everyday life, but rather a way of life.
So I decided to talk about my evolution with phenylketonuria by trying to show that it can’t stop us when we put the necessary efforts:
Chapter 1: From birth to the labor market. In 1981 a baby was born and his mother quickly realized that he was not like the others. He had a genetic condition called « phenylketonuria ». Through the completely normal challenges and obstacles of a child who evolves into adulthood, adolescence and university, we realize that in the end we live the same « problems » as any other human.
Chapter 2: Why should we take the diet seriously? I once discovered a phenylketonuria webinar organized by Patient Power. What I learned changed my perception of this disease and I made the decision to start taking my diet more seriously. The webinar was titled « Lifting the Fog » and that’s really what happened by sticking to my diet even more. If you want to know more about it, I invite you to read this other article I wrote some time ago: Lifting the fog.
Chapter 3: Why is it important to follow the diet for life? Shortly after, I launched the blog Phenylcetonurie Quebec, as well as its social platforms. My presence on the web led me to talk to a lot of interesting people and collaborate with them. Notably, Dr. Ben Green and dietitian Suzanne Ford who wrote an extremely interesting article on why it is essential to keep the low protein diet for life. I invite you to discover this article by clicking on this link: The importance of diet for life.
Chapter 4: Conclusion, why this blog and why the Super PCU (PKU) logo? I created this blog to share my positive vision of phenylketonuria and balance the many sites on the web that speak about it negatively (or rather in a very cold and scientific way). I try to bring the human and experiential touch that allows people like me to identify and relativize. In the end, everything will always be a question of attitude. How do we want to deal with phenylketonuria? While respecting the diet, especially from birth to adolescence (this is crucial), nothing prevents us from living a full and rewarding life.
The PKU Quebec day was extremely interesting and not only was each intervention relevant, but the most pleasant thing was to be able to meet and discuss with each other. I strongly encourage you to follow CanPKU and keep an eye out for their upcoming events.