The rare challenges of growing up in a Huntington’s disease family

Support is essential for children and young adults in our community

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by Becky Field |

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“When it started getting bad, it was like watching her drown.”

That’s how a young man named Morgan described watching his mother’s Huntington’s disease (HD) progress. His interview was part of a video created by the Huntington’s Disease Youth Organization (HDYO) about the condition’s impact on young people.

Many teenagers feel embarrassed if they’re seen in public with their parents, or if they’ve brought friends back to their family home. That’s a natural part of the “growing up and growing away” process.

But when you have a parent with Huntington’s disease, as I did, those feelings may be amplified. While eating at a restaurant, I’ve seen my family members with HD shout, abuse others, make unreasonable demands, be impatient, and refuse to accept that some menu items are unavailable. It’s caused strangers to approach us and say, “Keep the noise down!”

In addition, my family members with HD would at times appear disheveled and carry an offensive body odor. People would comment, “What’s that terrible smell?”

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It’s hard enough for adults to deal with the effects of Huntington’s, but it can be especially challenging for children and teenagers.

The disease has affected several generations of my family, taking the lives of my dad, granddad, and great-grandmother. I tested negative in the summer of 2023.

Children and teenagers in our family have been thrust quite suddenly into the caregiving role. They provide help with household chores, such as cleaning and grocery shopping, and personal care, such as toenail clipping and bathing.

Matt Ellison and the HDYO

The HDYO was founded by Matt Ellison and my fellow columnist B.J. Viau after they met each other and connected with other young people at the HD World Congress in 2009. They believed that young people were the forgotten members of our Huntington’s community and that there were gaps in the care and support available to them. In many ways, that’s still true today.

The organization was officially launched in February 2012, offering a younger, funkier point of access for young people seeking connections and information about the disease.

Later that year, Ellison publicly shared his story and spoke about the need for an organization like HDYO. He said he was 7 when his father was diagnosed with Huntington’s. As the disease progressed and Ellison became a teenager, it put a huge strain on every family member, causing horrendous stress. Ellison continued:

“Every time [we] went out as a family, people would stare at my dad due to his movements, and this is incredibly difficult for a young person. And it generated such anger in me … I used to actually hate going out with my father. And I love my father, but just the fact he had HD just made me ashamed to go out with him, and I was ashamed that I felt that way as well.”

He said he was bullied at school for years because of his father’s disease, resulting in trauma, truancy, poor grades, and his attempt to run away from home. Ellison eventually dropped out of school at age 13 and spent the next three years homeschooling himself and caring for his father. He then got a job, but by the time he was 18, his father had become so unwell that Ellison had to stop working and become a full-time caregiver. He did that until his father died three years later.

Other difficulties

Having a family member with Huntington’s disease can affect young people in countless other ways. They may worry about getting involved in romantic relationships, about how and when to tell potential or current partners about their family history. It makes the prospect of commitment and marriage more challenging. Those who’ve tested positive or who are unsure about their status may see little point in beginning relationships if they believe their life will be cut short by the disease.

Huntington’s also can pose barriers to the formation of friendships. It can be difficult to open up and share the raw reality of living with the disease.

Facing the risk of inheritance in your formative years can lead to depression and anxiety, as well as grief, pain, and frustration. I found that hobbies like sports, listening to music, reading, shopping, writing, painting, and spending time with friends were all helpful ways of coping.

Young people can connect and receive support through groups like the HDYO, the Huntington’s Disease Association’s Youth Engagement Service, and the Huntington’s Disease Society of America National Youth Alliance. It can be helpful to talk with others who are in the same situation and who face the same risk of developing the disease. As young people shared in a video created by HD Youth Voice, the key thing to remember is that “You’re not alone.”

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.


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