The following is Shaunacy De Jong’s Huntington disease (HD) story. Shaunacy lives in Sauble Beach, ON.
When I was about 13 years old, I figured out something was wrong with my mother. She had irregular finger movements, rapid eye twitching, terrible handwriting, and behavioural changes. At the time, she had only received a diagnosis of bipolar disorder, but 13-year-old me knew there had to be something else wrong.
Four years later, my family and I learned about Huntington disease (HD). Mom was adopted and we didn’t have her biological family’s medical history – we had no way of knowing HD was present. I researched HD on Google and discovered I could potentially inherit the disease. As soon as my mother was diagnosed in 2014, we decided to get some help from the Huntington Society of Canada (HSC). We reached out to Corey Janke, a social worker with HSC, and he kindly drove three hours to our small community (that had no HD supports in place) to educate us on what was to come. Learning more about the disease was terrifying, but there was the slightest bit of relief knowing we finally knew what our mother was facing. It was also amazing to connect with many other families living the exact same story.
Given the difficulties my mother was experiencing caused by the symptoms of HD, it was very challenging to encourage her to engage with the support services offered by HSC. However, after not having support for myself all those years, I decided to take advantage of the offerings. Although my town does not have an HD Chapter, I connected online with Young People Affected by HD (YPAHD). I was able to match with a mentor and attend youth camps and conferences. As soon as I realized how big the HD community was, my family and I decided to participate in fundraising events, as well. We have held two successful events so far with plans for future offerings.
I am also very fortunate to be on the HD-COPE team, a collaboration between the Huntington Society of Canada, the Huntington’s Disease Society of America (HDSA), and the European Huntington Association (EHA). HD-COPE was formed to replace the ad hoc approach to incorporating patients’ voices in global therapeutic development efforts for HD. The group’s role is to communicate the HD community’s experiences and needs to regulators, industry, and researchers.
After my mother received her diagnosis, it was hard not to feel hopeless, but once I engaged with HSC, it opened up opportunities for me to use my voice and find purpose even while facing this awful disease. HD continues to take its toll on my mother, now in the latter stages of the incurable disease. However, knowing that the HD community is always there for us provides the comfort we need to keep fighting and advocating.
