Embracing My CAG Score

Sometimes when you meet a person, there’s an immediate connection. Like kindred spirits, you become instant friends.

When I attended my first Huntington Society of Canada National Conference, I met someone like that, and my mind opened to a new way of thinking. At the time, I was still relatively new to the Huntington’s disease (HD) community and hadn’t met many people who were affected by HD. I could’ve counted them on one hand.

That first conference I attended was mind-blowing. So many HD-affected individuals and families were in one place. Dozens and dozens of them. It was both overwhelming and uplifting at the same time. I vividly recall sitting in the hotel’s large dining area, filled with table after table of smiling faces. The clamor in the room tinged with excitement as everyone discussed the latest in HD science and research.

One person came up to me to chat. I glanced at his name tag, noting that he had written “Team 42” on the label.

“Team 42,” I thought. “Could he be referring to his CAG score?”

When I first underwent genetic testing for Huntington’s disease and received my result, I had no idea what the CAG score was or what my number meant for me. I didn’t understand at the time what the connection was between a person’s CAG score and the age of onset for HD symptoms.

I quickly learned that the CAG score referred to the number of times the section within the HD gene repeated itself. Everyone’s CAG sequence repeats a small amount, but for people who are said to be HD gene-positive, the CAG sequence repeats an extended amount of times. Once you get more than 40 repeats, it’s expected that you will develop Huntington’s disease in your life if you live long enough.

Mine was 42.

At the time the conference was taking place, I was at the point in my HD journey where I was treating my CAG repeat score like the passcode to my credit card. It felt to me like it was a very personal thing, and I was a bit uncomfortable sharing it. I’m not sure why I felt that way. Perhaps it was a lingering instinct that Huntington’s disease should be kept in the shadows by fear of genetic discrimination. I don’t know. Seeing this person at the conference literally wearing their CAG score on their shirt fascinated me.

I began having a conversation with this man who would turn out to be one of my kindred spirits. Our journeys were similar, our fears and struggles alike.

And we were both on “Team 42.”

We chatted at length during this conference and many times since. I learned from him how therapeutic it can be for someone to hear about another person’s lived experience with Huntington’s disease. This is especially paramount given the rare nature of the condition. It’s so easy for someone to feel alone in the battle. I knew that firsthand. So, it was time for me to act.

In the months and years since that first conference, I have become a very vocal member of the Huntington’s disease community. I have spoken about HD at various events, sharing my personal story with the goal of raising awareness and supporting others who live with the illness. I’ve written blogs and articles and had a presence on social media. I’m no longer hesitant to share my CAG score or anything else about my HD for that matter. But that’s me.

The focus of this column is not to encourage you to be a more vocal member of the Huntington’s disease community if you don’t want to. There are countless reasons why a person might want to keep their diagnosis, or risk of diagnosis, to themselves. It’s an extremely personal decision, and everyone has the right to live the journey the way they want to, without guilt.

Find what works for you and provides you with support. Becoming vocal and interacting with others in the community was therapeutic for me, so I kept doing it. Writing this column is therapeutic for me, and my hope is that by reading it, you are finding some comfort as well, whatever “team” you’re on.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.