Imagining a time capsule after a Huntington’s disease cure is found
What items would we put in an HD time capsule?
Imagine what a world without Huntington’s disease (HD) would look like if a cure were found. It would be a world free from the suffering caused by symptoms like chorea and cognitive, emotional, and behavioral changes. There would be no more swallowing difficulties, weight loss, or pneumonia attributed to the disease. Genetic counseling and testing wouldn’t be required. There would be no need for specialized medicine, equipment, or interventions.
Huntington’s disease has affected several generations of my family, taking the lives of my dad, granddad, and great-grandmother. While I tested negative for the disease in the summer of 2023, I have witnessed firsthand the disease’s devastating consequences.
With a cure, families would be released from the fear of inheriting the disease and from their role as caregivers. There would be no need for selective in vitro fertilization to ensure that children aren’t gene-positive for HD. Families who had been affected for generations would finally be set free.
Imagine if we buried an HD time capsule to be opened only when the world was completely liberated from the disease. What might we place inside of it? Perhaps we could add family photos and a family tree that registered those who had been affected throughout generations. Maybe it would contain personal accounts in the form of diaries that detail what daily life was like while living with Huntington’s disease.
Death certificates could be included, providing vital information about the cause of death of people who suffered from HD. Medical books and caregiver manuals could provide additional insight, along with newspaper and magazine articles that offer a timeline for the scientific breakthroughs that led to a cure.
A patient who has the disease could write a letter to someone in the future, describing their family history, what life is like, and how HD affects them, including how it makes them feel.
Medical records and letters from specialists like neurologists, physiotherapists, and occupational therapists could also be added.
These items would help teach future generations about the difficulties that HD patients, their families, and their caregivers experienced. A time capsule would ensure that people don’t forget the physical and emotional effects of this complex disease, whose consequences ripple through families.
I believe in my heart that a cure for Huntington’s will one day become a reality. Every day we move a step closer to that. I pray this day will come quickly so that our entire community can open such a time capsule in a world that is finally free of Huntington’s.
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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