Recently, we were reached out to by genetic counseling students wanting to participate in a Game Over HD session. We worked with 5 incredibly brave individuals from Game Over HD who immediately volunteered to tell their testing experiences and help the students understand the complexity around testing for Huntington’s disease. While playing a lighthearted game, 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 while being impacted by 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.
Just because someone receives a negative result does not mean it is always a celebration. That someone at risk would immediately want to know their results or should know their results. That HD is not always known within family lineage. Receiving any result may be the start of a journey for identity. Because of these members, there are faces put to stories that will be remembered forever. Students who bonded over gaming with this group left feeling even more interested in HD while also declaring their desire to remember these stories as they move forward with their academic and professional careers. Stories are powerful and it doesn’t hurt to add a little gaming in too!
