Leveling up for the future
Dedication and purpose combined with a little gaming joy
Written by |
Erika Boulavsky is the community outreach specialist at HD Reach. (Photo courtesy of HD Reach)
This article was provided by our partner, HD Reach. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Huntington’s Disease News.
Recently, genetic counseling students reached out to HD Reach, expressing their interest in participating in a Game Over HD session. For those of you who don’t know, HD Reach is a nonprofit based in North Carolina with a global gaming club for those affected by Huntington’s disease (HD).
We get together multiple times a week, playing games for all skill levels, having conversations that may or may not revolve around our connected stories involving Huntington’s disease, and creating a space for our members to feel welcome. On our private Discord, we have the opportunity to chat anytime, take a request like this from the students, and quickly get it out to our Gaming HD community.
We worked with five incredibly brave individuals from Game Over HD who immediately volunteered. They agreed to share their experiences undergoing testing and to help the genetic counseling students better understand the complexities around testing for Huntington’s disease. The cool part is that this is done while playing a video game.
While the video game was lighthearted, these individuals shared very personal and vulnerable stories. They talked about the different ways they found out about their results, what they wish they knew then, why some choose to live at risk, survivor’s guilt, caregiving, their hopes for the future, and how they cope with the impact of HD.
They each shared unique perspectives that brought to the forefront why testing for Huntington’s disease is an individual experience that deserves to be guided with empathy, understanding, and care. The video game may have been lighthearted, bringing comedic relief, but the conversations were raw and real as the students heard real-life stories that challenged the casual “Well, why not just get tested?” or the “Congratulations, I’ve got a big present for you! You’re negative for the HD gene mutation!”
Humans are a beautiful blend of complexity, and the same can be said about a genetic illness with no cure. Humanity and genuine empathy flourish when we are curious and eager to learn about authentic experiences. Sometimes a textbook does not always bring the authentic feelings and experiences that are real for many. However, through video games and interactive media, people can better understand the struggles of those with Huntington’s disease.
A negative result isn’t always a cause for celebration, nor should we assume that someone at risk is immediately ready to learn their genetic status. For many, a diagnosis — or lack thereof — is just the beginning of a complex journey of identity, especially when a condition like Huntington’s disease is not previously known in their family.
Thanks to these members, the stories they shared now have faces that will be remembered forever. Students who connected with this group through gaming left inspired by the HD community, and we, in turn, were moved by their empathy, curiosity, and commitment to their goals, both academic and professional.
Stories have the power to leave a lasting impact — and adding a touch of gaming only makes them even more memorable.
