February 15, 2017
By Natalie Marnica
Do you ever wonder what it would be like to be around people who share similar life experiences and struggles as you? I know I did. That is, until I found YPAHD. Young People Affected by Huntington Disease is the national youth chapter of the Huntington Society of Canada (HSC) and it’s composed of young people from across Canada.
When I first heard about YPAHD, I was hesitant to connect. I didn’t know what to expect. Growing up, I didn’t know of any other people outside my family that had Huntington disease (HD). Most people I met didn’t even know what HD was. My grandfather was ill, his siblings too, a few cousins and eventually, my mother. For a long time I thought we might be the only ones and became very distant from friends and colleagues for several years.
Natalie (right) pictured with our Director of Family Services & Community Developement, Angèle Bénard (left).
To help cope with physical pain and mental anguish, I began practicing yoga. I studied for several years and witnessed a huge shift in my body, mind and in my ability to process emotions. I began teaching and soon realized that the HD community could benefit immensely from these practices. So, after years of isolation I decided to reach out to HSC. I was determined to help support and prevent suffering wherever possible and, luckily for me, they welcomed me with open arms!
My first YPAHD experience was in 2015 when I presented my Yoga as Therapy talk for HD. The day was filled with activities, games, and research updates; including chats on specific topics like genetic testing, family planning, care giving, grief and loss. It was comforting to be in a room full of other people who shared similar struggles. Hearing other people’s stories and experiences made me feel like I was not alone. I have since participated in the 2016 YPAHD Day, became a Mentor in their Mentorship Program and have been nominated as the YPAHD Representative for 2017!
What I enjoy most about YPAHD Days are the games and group activities. The coordinators do a great job at bringing fun and lightheartedness to an otherwise HD-heavy world. I’m always blown away by the amount of empathy and support that is generated by YPAHD.
Our next YPAHD Day is coming up on Nov 17, 2017. I’m looking forward to seeing old friends and making new connections with people who are fighting the same fight. Join us if you can! It is a great way to connect, get support and be inspired by our community. Contact events@huntigtonsociety.ca for details!