What is HD? PSA Guest Post
Jaclyn Skinner, 27
May 9, 2016
Huntington disease (HD) has always been part of my life. My grandma started showing symptoms when I was five, and since the disease is genetic, my mom has unfortunately inherited it. Each child born to a parent with HD has a 50% chance of inheriting the disease. As soon as I found out about my mom, I wanted to find people who were like me and do everything I could to bring an end to this disease.
I am currently the president of the Huntington Society of Canada’s (HSC) youth chapter, Young People Affected by Huntington Disease (YPAHD). It is a powerful group and it is refreshing to see how many people in my generation want to be part of changing the course of this disease and provide support to one another.
Two years ago, I learned that I am gene positive. HD can change you physically and mentally, and my greatest fear is losing myself. I am a very independent person and it is really hard for me to ask for help. So knowing that this might be in my future is terrifying.
It is the support from my family that gets me through this. They are amazing. There is power in numbers, and I have a whole team on my side.
The Huntington Society of Canada has always been there for me. I have met social workers, staff and other people from the HD community who are all inspiring and motivating. They all have provided incredible advice and the courage I need to move forward.
I will do whatever I can to change the course of this disease. I am part of the ENROLL-HD study, and I will continue to be actively involved in YPAHD and HSC. My greatest hope is that I will be part of the last generation that knows what this disease can do to a person. I want to be the last.
To see Jaclyn’s testimonial, click here.
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Huntington disease (HD) is an inherited neurological disorder that is currently fatal and incurable. It creates emotional, cognitive and physical symptoms. To learn more about HD and how the Huntington Society of Canada supports families affected by the disease, visit www.huntingtonsociety.ca/psa-campaign.