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Embracing the Huntington’s disease community


I had chosen a seat towards the back of the conference room because I noticed the legendary Jimmy Pollard sitting there. I didn’t want to miss the chance to sit next to this Huntington’s disease (HD) advocate and all-around amazing person.

I was at the Help4HD conference in Detroit, Michigan. It was my first time attending an event like this on my own. In the years past, I wouldn’t have had the emotional strength to do such a thing, but I knew there were going to be a bunch of people there whom I had met only virtually, through social media, or while working on my second book about Huntington’s. It was an opportunity I didn’t want to pass up, and I am glad I didn’t because something wonderful happened that weekend.

At the conference, I spent the day chatting with Jimmy and the other people at our table, listening to speeches, and learning about the latest HD research. Jimmy was one of the guest speakers, and he brought me to tears several times with his inspirational speech. He explained some of the symptoms of HD in easy-to-understand terms. He had us participate in his famous handwriting exercise, where we had to write our names painfully slowly, to give us an idea of what it felt like to have HD. He explained how we have to wait longer than normal for people with HD to formulate an answer to our questions. And he spoke about the dedication and enduring love it takes to be a caregiver.

From my seat at the back, I had a good view of the entire room. Throughout the day, I watched the people at the tables in front of me, and I witnessed something very special. A number of people were symptomatic for HD, three or four had visible chorea, and they were just a normal part of the crowd.

I don’t know anyone else with HD in the town where my dad lives, and the disease is not often talked about in my family. This sometimes makes me feel a bit out of place in my everyday life. It can be quite isolating and lonely, especially since not everyone in my family is accepting of my dad’s HD; not everyone is willing to alter their behavior, like Jimmy suggested, to allow for better outcomes for him. But at the conference that day, the people with HD felt like valued members of the community. In fact, it seemed as though they were showered with even more love and attention because of it.

To see people being patient and waiting for someone to answer a question instead of talking over them, to witness a man with HD speak on a panel about his experiences and to have the audience understand when he strayed off-topic, to see a man with considerable arm movements dancing until the DJ played the last song of the night—to see people with HD fitting in—is not something I have experienced before. Witnessing the love and understanding of the HD community gave me hope for my future. It showed me it is possible to fit in and be accepted even when I have symptoms of the disease.

The next morning, I was in the hotel lobby saying goodbye to some of the wonderful people I had met. Like Erika from HD Reach, who volunteered her time to work on my book; Teresa, who helped organize the event; Adam, who was always smiling and reminded me of my dad 15 years ago; and the three Wyatt sisters, who were there lovingly supporting each other. Around these people, I felt a sense of calm because somehow they reminded me of my own relatives. When I went to say goodbye to the sister with long, straight hair, she leaned over and gave me a hug. It wasn’t just a short hug of acquaintances; it was a long hug of comfort and understanding. I pulled back when I thought it was over, but she kept hugging me so I leaned into it even more.

What I learned that morning was that people from the HD community are really good huggers. I received hugs from everyone before I left. Some felt deep and heavy with understanding, and others felt happy and hopeful because of a new friendship made. But overall, those hugs and the people I met that weekend made me feel loved and accepted, for the me I am now and the me I will be in the future, the one who is symptomatic for HD.

That is a special feeling I will never forget.

Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.






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