2022: The Year We Recognize Pre-Symptomatic HD Population
Sixteen years – that’s how long it’s been since I first learned about my mom’s diagnosis of Huntington’s Disease (HD). Yet, here we are today, without an effective treatment to slow down this incurable, degenerative disease that has taken the life of my mom, friends, and many other HD community members.
I am currently a “healthy” 31-year-old who should have “nothing to worry about” – but I race against an invisible clock. As someone who carries the HD gene, I am guaranteed to lose my ability to walk, talk, and think. I will be the next victim of Huntington’s Disease – unless we do something today to change that.
For the longest time, I kept telling myself, “Seth, there will be a treatment in time.” But in all honesty, there’s a [high] chance there might not be a treatment. My previous statement doesn’t come from a lack of optimism or hope. Anyone who’s close to me will tell you that I try to keep a positive outlook on life. However, I have to be realistic about what the outcome might be one day. It’s not easy to process, let alone admit, but I’m learning to accept my reality. Now, the next step is asking myself, “What’s in my control today that can change the outcome for other HD patients?”
For almost 11 years now, I’ve lived with the knowledge that I am guaranteed to get HD based on my positive genetic test results. But it wasn’t until last summer that it finally hit me: I can either wait around and hope something magical happens, or I can act with urgency.
Since then, I have been working behind the scenes with some of my long-time HD friends, BJ Viau and Lauren Holder, on how we can change the way we look at HD by treating those, like myself, who are pre-symptomatic. We have had countless conversations with various stakeholders in the HD space, recorded podcast episodes, and even started a Discord channel (similar to a Facebook group) to get the conversation going around the sense of urgency.
2022 is the year where I choose to dedicate more of my time and energy to the pre-symptomatic population within the HD community. My goal is to find a way to allow this sub-group to participate in clinical trials, or at least understand the true reason why participation is currently not allowed (more on this in a future blog – stay tuned!).
It’s a big goal, and one I cannot do by myself. That’s why I encourage members of the HD community to join me in this battle by joining the Discord channel or personally reaching out to me to share your story. The larger the army we build, the bigger the opportunity we have to emphasize the unmet needs of the pre-symptomatic HD population. Are you with me?
