Genetic disease casts dark shadows over a family tree

Picture a family tree, its branches stretching toward the sky, vibrant with life, yet bearing the deep scars of an inherited gene mutation — one that causes Huntington’s disease (HD). For those unfamiliar, this neurodegenerative illness ruthlessly destroys the mind and body by erasing memories and stripping away independence. There is no cure, and there’s no way to halt its progression.

When HD enters a family line, it doesn’t just alter one life; it reshapes the destiny of generations.

Here is how HD’s deadly mathematics haunts every pregnancy and birth: Each child of an affected parent faces a 50% chance of inheriting the gene. For example, my wife’s father was one of five siblings in a family that had HD in its gene pool. Sadly, he and two of his siblings ended up being gene-positive for the disease.

Those three siblings carried not just the gene, but the weight of knowing that their future held the same symptoms and challenges they’d witnessed in their affected parent. They faced the gradual loss of control over their bodies and minds, watching as their independence slowly slipped away.

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Survivor’s guilt

But what of the two siblings who didn’t inherit HD? Their “escape” came with its own profound burden. They became witnesses to their siblings’ decline, carrying the weight of being the “lucky ones.”

That’s when survivor’s guilt takes root, blossoming into a different kind of pain for the survivors — those who remain physically untouched by HD yet emotionally scarred by its presence.

The story doesn’t end there. Each of those three affected siblings who has children passes on that same 50% risk. The family tree continues to grow, but beneath it stretches HD’s ever-present shadow. With each new generation, more loved ones face the same fears, the same decisions, the same heartbreaking disintegration of minds and bodies.

For my wife, Jill, this scenario isn’t hypothetical, but her family’s reality. She has watched relative after relative battle this horrible disease. Our daughter, Alexus, is also gene-positive. Jill knows intimately how HD claims not just the affected individuals, but pieces of everyone who loves them.

Yet within this story of loss and challenge, there’s also one of hope and resilience. Every day, researchers work to develop better treatments. Support groups and advocacy organizations fight for awareness and understanding. Families like ours share our stories, breaking the silence that too often surrounds rare diseases.

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.