A patient’s view of genetic testing for Huntington’s disease, part 1

First in a series.

When people ask my wife, Jill, about her Huntington’s disease, I never expect her reply to reach for a playground metaphor. But she has a way of drawing from everyday life, turning even the hardest subjects into something instantly relatable.

“It’s just like a teeter-totter,” she told a friend, her hands sketching invisible arcs in the air. “Deciding whether or not to get tested for the gene, there’s always weight on both sides. Some days the reasons to know are heavier. Other days, it’s not knowing that has the weight.”

For those who don’t know: Huntington’s disease is a rare, inherited neurodegenerative illness that slowly destroys nerve cells in the brain. Symptoms begin subtly in adulthood — mood changes, movements that slip out of control, and cognitive decline. And then the disease relentlessly progresses.

Jill’s experience with Huntington’s began in childhood as she watched her father’s slow decline because of the disease. She knew she was at risk, too. But Jill’s path, like so many in the Huntington’s community, has never been simple. She’s long been an advocate, fighting not just for herself but for all those in the community who are wrestling with the weight of “what if.”

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Late-night conversations, online forums, and support groups bring similar frustrations to the surface, especially the chorus of voices that discourage genetic testing: Why would you want to know? There’s nothing you can do anyway.

But Jill insists, “Huntington’s symptoms start inside, years before anyone sees the physical signs. There is so much you can do to prepare. You can participate in research, organize your plans, or simply find peace after years of wondering.”

She points out that medical professionals often dwell on the risks involved in genetic testing, such as potential mental strain, insurance headaches, and discrimination. All real, all valid. On the other side of her teeter-totter, though, sits the relief and clarity that can come from finally knowing.

“Respect yourself enough to face things as you are, when you’re ready,” Jill says. “There’s no one right answer. Just the best answer for you.”

She knows that, in the Huntington’s community, rare doesn’t have to mean invisible. But it does mean too many people are struggling out of sight, shouldering uncertainty for decades.

Jill emphasizes that Huntington’s disease is hereditary; it’s passed from parent to child, and the resulting fear and uncertainty ripple through families and generations. That inherited ambiguity makes each decision to seek knowledge, or to wait, uniquely fraught.

She believes that progress for the community lies not in pushing one path over another, but in carving out space for open dialogue, education, and support. Breaking the silence means no one feels isolated in their choice.

“No one should feel alone or judged when facing this deeply personal decision,” Jill said.

My wife believes that real progress will come when every person at risk sees their choices as valid — whatever side of the teeter-totter feels right that day. And for the rest of us, Jill’s words are a reminder: Respect and support are the balance we can offer, no matter which way the teeter-totter rests.

Come back for part two, where I’ll discuss the supports for people who pursue genetic testing.

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.