What is HD? PSA Guest Post
Rob Laycock, 67
May 30, 2016
My mother was diagnosed with Huntington disease (HD) back in the early 70s, and I tested positive for the Huntingtin gene in 1993.
The testing experience is life-changing — it is something right up there with birth and death. Finding out that I had the HD gene came as a complete shock, and it took me a long time to accept the results and to get my life together afterwards.
Huntington disease affects everything: your emotions, your coordination and your cognition. It is a relentless, degenerative disease. My greatest fear is losing control over my body, my mind and my thoughts.
After my test results, I became involved in the Toronto chapter of the Huntington Society of Canada (HSC). I attended support groups and volunteered for the organization for a long time. One of the social workers at the Society’s Toronto Resource Centre convinced me to volunteer at the HSC retreat, which was a wonderful opportunity for people with HD to get away from their daily lives and expand their horizons.
I also do what I can to help the research effort. I have been to Long Island for MRIs and I have gone through a battery of tests with the PREDICT-HD and ENROLL-HD studies.
The Huntington Society of Canada is my family right now. I believe the HD community is a powerful group of people that are working together for mutual support and also supporting research. I hope for an effective treatment for HD, and soon.
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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.