Reflecting on Creutzfeldt-Jakob Disease
On a seemingly ordinary October day in 2023, my father’s brain ceased to function. A year later, he passed away. He had been diagnosed with Creutzfeldt-Jakob disease, a condition so rare that most doctors might never encounter it in their careers.
If this sounds unfamiliar, don’t be too hard on yourself. I only learned about it while frantically searching online for answers to my dad’s alarming symptoms—hallucinations, ataxia, dystonia, confusion. It was among the worst possibilities. A few months later, this nightmare turned real when doctors at Duke University provided a dire prognosis.
Both my mother and I were heartbroken. My father already struggled with dementia, but, amidst my worry, I asked him, “Will I still be able to play soccer?” He understood he was a patient, but he seemed unaware of how serious his condition was.
Creutzfeldt-Jakob disease is a rare and fatal brain disorder caused by misfolded proteins known as prions. You might recognize a related prion disease, which is commonly known as “mad cow disease.”
No, my father never consumed contaminated meat. A spinal exam revealed he had sporadic Creutzfeldt-Jakob disease, which, as stated by the Cleveland Clinic, has an “unknown cause.”
It’s still shocking to me. Out of all the ways one could die, my father suffered from something so obscure. As someone who seeks to understand the world, accepting that was incredibly difficult.
Creutzfeldt-Jakob disease comes in various types. The sporadic version my father had can emerge without any warning. There are also genetic forms, those resulting from contaminated medical instruments, and types related to consuming beef from infected cows.
It’s crucial for people to know about this. That’s why I want to commend Sen. Jon Husted (R-Ohio) for spearheading the effort to mark November 12, 2025, as Creutzfeldt-Jakob Disease Awareness Day. Raising awareness can lead to more funding and research aimed at finding a cure for this devastating illness.
But that’s only the beginning. Prion diseases receive less federal focus compared to other neurological conditions. If the National Institutes of Health increased funding, it could help researchers develop early detection methods and potential treatments in the future.
After attending our first Creutzfeldt-Jakob Disease Foundation event a few months following my father’s death, it struck us that we had been fortunate compared to many families. We had a year with him, and although it was filled with tough times, we cherished those moments. Some families experience only a few weeks—or even just days—of that shared time. In many cases, the diagnosis isn’t confirmed until after a loved one has passed away.
The Creutzfeldt-Jakob Disease Foundation became a vital resource for my family. They offered grief support, educational resources, and a deep understanding of the emotions we faced as we watched a loved one decline. In conversations with individuals from other countries who faced similar losses, many expressed that organized support like this is unfortunately rare outside the U.S.
After my father died, a mobile morgue traveled from the Foundation’s base in Ohio to North Carolina to collect his brain. With our permission, it was donated to researchers dedicated to studying this disease. I believe that was what he would have wanted. He had a generous spirit, and I think he would have felt proud knowing that a part of him could help others avoid the same fate.
This November 12th, I found myself in a doctor’s office, reflecting on families grappling with harrowing prognoses. I hope that by keeping those in mind, promoting awareness, and advocating for research, no one has to endure losing a loved one to something as bewildering as an “unexplained event.”
