My Experience at Huntington’s Camp

By: Caitlin Austin

This biological string of nucleotides is something we universally share. In my fourteen months as a genetic counseling student, the majority of my efforts have revolved around that string of nucleotides, so I have had a lot of time to think about it.

If you really take a second to pause and consider how much of your life is determined by those A’s and T’s, the G’s and C’s, I bet you will be taken aback by how something so small can be of such consequence.

These were the thoughts running through my head as we pulled into Camp Friendship for my weekend at Huntington’s camp. I was slightly nervous as we started to unload the bus and organize the luggage. We had discussed Huntington’s in class plenty of times. We’d reviewed how the repetition of three nucleotides, cytosine-adenine-guanine, could lead to this progressive neurodegenerative disorder if the expansion was large enough. We had discussed the severe symptoms and the adult onset.

But we had never talked with a person affected by Huntington’s. We had never seen the chorea, their jerky involuntary movements, in person. I didn’t know what to expect or how I would feel.

The campers ranged in age from their 40’s to their 70’s. Some were already experiencing the chorea, while others only had subtle symptoms. These were the things I noticed right away. But after spending only a few hours with the campers, their symptoms faded from my mind as they shared moments from their lives, their experiences.

We spent the weekend doing crafts, playing games, and eating our meals “family style”. These activities brought us together. I was surprised by how many things other than Huntington’s I thought about that weekend. Each camper had a story to tell, and Huntington’s was only one piece of their journey.

I think what I enjoyed most was watching how the campers interacted with each other. They were supportive and kind and there was a natural camaraderie among them. Several of the returning campers remarked that this was one of their favorite weekends of the year. The act of simply being together was powerful.

I think the experience reminded me that our actions do not need extravagance to make a lasting impact. As genetic counselors, we are often with patients in times of great stress and uncertainty in their lives. While we cannot give them the answer of what to do, we can sit with them while they decide. While we cannot cure the disease their child has been diagnosed with, we can support them as they learn to cope. The power of simply being fully present should not be overlooked.

I left Camp Friendship feeling gratitude for the opportunity to spend time with all of the campers. Although nearly every aspect of their lives had been altered by their Huntington’s diagnosis, they did not let that diagnosis define them. Our string of nucleotides may be an important piece of who we are. But it is just that, only one piece.