A Genetic Curse: A Personal Insight into Huntington’s Disease

By Alina Lui

Dr. Harding's lab. The Huntington protein can be seen modelled on the computer, and the figure on the right.

Imagine being trapped inside your own body while a protein in your brain destroys your neurons slowly yet deliberately. Imagine it is eating you from within, leaving you with neither your mind nor your self. This is Huntington’s disease, a condition that, despite its obscurity, is nothing short of a nightmare. It is like having several neurodegenerative diseases at once: Parkinson’s, Dementia, and Alzheimer’s rolled into one ticking time bomb. 

One summer day, as heat waves radiated from the asphalt, I had the opportunity to step into an air-conditioned lab on 101 College Street, in Toronto, Canada. The lab belonged to Dr. Rachel Harding, where she studied Huntington’s disease, specifically a mutation in the Huntington protein. Over the past decade, Dr.Harding has relentlessly analyzed the mechanisms and interventions that delay the disease’s progression. Like nightmares, the disease lingers in the shadows—just out of reach. And it doesn't go away easily. 

Like nightmares, the disease lingers in the shadows— just out of reach.

A single mutation on chromosome four causes the three-letter code, CAG, to repeat itself forty times instead of twenty-three. It turns a necessary protein for brain function and development into its own silent yet deadly executioner. The gene is autosomal dominant, which means that each child has a 50% chance of inheriting it. The unfortunate child would continue to pass on the death sentence through generations like a family heirloom that nobody wanted, while the other would lead a normal life. Although the mutated gene is present from birth, the onset of symptoms varies. Once the symptoms strike—usually at one’s prime of life, between 30 and 50 —they would be expected to live only 10-20 more years. 

Source: BBC News. The left side image shows a healthy brain, and the right side image shows the brain of a person with Huntington's Disease. As the brain matter dies, the brain itself deteriorates.

It starts with your basal ganglia— the caudate nucleus and putamen– components of the brain responsible for your voluntary movements, learning, and memory. It preys upon the cerebral cortex next, permanently altering how you feel, behave, and think. The protein is like a small, poisonous parasite that silently feeds off its host. Dependent on them for existence, while simultaneously draining them of life.  

Picture this. Waking up with Huntington’s disease means that you can’t even get out of bed properly due to the lack of control in your muscles. The most mundane tasks—such as brushing your teeth or making your bed- would feel overwhelming. Your body feels like it is constantly being hijacked by another force, and you would have trouble finding the words to describe what a horrible day you have had. 

Results show patients having uncontrolled ‘dance-like’ movements called chorea, developing tremors or eye twitches, and problems with speech. However, some would develop akinesia, where they may become stiff with little to no movement at all. Nevertheless, most undergo inevitable cognitive changes, including difficulties prioritizing, learning, putting thoughts into words, and answering questions. These challenges worsen over time until they are no longer able to care for themselves. As the disease progresses, patients may require physical therapy or specialized care to manage symptoms or acquire assistance in daily activities. 

In September of 2025, researchers at uniQure made a discovery that changed the trajectory of many lives. For the first time, Huntington’s disease was treated successfully with gene therapy. A trial shows that three years after undergoing an intensive brain surgery, there has been a 75% decrease in progression, and neurons have slowed in disintegration. To put it simply, neurosurgeons would inject the drug (named AMT-130) deep inside the brain, containing DNA that neurons use to create microRNA. Then, they intercept and disable the messenger RNA responsible for creating the toxic protein. 

Huntington’s disease has lingered for many generations: in the early 1900s, those ill-fated victims were labelled unstable and as drunks. They were thrown into hospitals and institutions to be forgotten, or hidden away in attics to ease the family’s shame. It was a sort of nightmare that you do not wake up from, but you can only confront the truth when you are awake. Medicine has advanced considerably to the point where we can not only name and understand it, but even have ways to tackle the faulty gene. 

While working with Dr. Harding over the summer, I learned about processes in scientific research, such as the centrifugation of solutions and protein crystallizations. I’ve learned that the profound impacts of Huntington’s disease go far beyond the physical symptoms: families who face difficult decisions about whether to be tested for the disease, and the emotional and psychological toll imposed on them. 

While witnessing first-hand the revolutionary contributions made towards treating Huntington’s disease, I thought of the stigma and taboo surrounding it for most of history; compared to other neurodegenerative diseases like Alzheimer's and Parkinson’s, Huntington’s disease significantly lacks public understanding and accessible resources. Shouldn’t a disease with such a heavy impact warrant wider awareness? To combat this issue, research should continue to be funded, families should be supported, and counselling for those at risk should be encouraged. While navigating life with Huntington’s disease could seem like a nightmare, with hope and a strong support system, there is potential to rewrite the ending. 

Works Cited

Ahmed, Asma. “On the Trail of a Treatment for Huntington’s Disease - Health E-News.” Health E-News, 24 Apr. 2024, healthenews.mcgill.ca/on-the-trail-of-a-treatment-for-huntingtons-disease/. Accessed 21 Nov. 2025.

Gallagher, James. “Huntington’s Disease Successfully Treated for First Time.” BBC, 24 Sept. 2025, www.bbc.com/news/articles/cevz13xkxpro. Accessed 4 Nov. 2025.

National Institute of Neurological Disorders and Stroke. “Huntington’s Disease.” National Institute of Neurological Disorders and Stroke, 8 Apr. 2025, www.ninds.nih.gov/health-information/disorders/huntingtons-disease. Accessed 4 Nov. 2025.