We all dream about finding the absolute love of our life: the person that makes us feel warm and supported, the one we can’t imagine our world without. For Carole Colburn, that was her husband, Jay Mitzner. A lawyer and musician, Jay was smart, warm, and community-oriented; Carole couldn’t help but fall in love. To this day, she thinks back on their 23 years of marriage with a smile, saying that those were the best days that she could’ve ever had. Unfortunately, Carole lost Jay to a rare neurodegenerative disorder called Creutzfeldt-Jakob disease (CJD).

According to reporting by Shamir Owens of WLNS, Jay began experiencing symptoms in April 2022. His head felt fuzzy; he struggled with memory loss and sometimes felt confused. The partners visited the emergency room. Eventually, they received the diagnosis of CJD. Neither of them had heard of the disorder before. Even more frighteningly, CJD comes with a poor prognosis; the National Institute of Neurological Disorders and Stroke (NINDS) of the NIH reports that 70% of people with Creutzfeldt-Jakob disease die within one year of symptom appearance.

Eight days before his 77th birthday, and just a few weeks after his symptoms appeared, Jay passed away. In the wake of this tragic loss, Carole turned to action. She decided that, from that day forward, she would do whatever she could to raise Creutzfeldt-Jakob disease awareness and research funds. Most recently, she even hosted a fundraiser where Jay’s band, the Bayou River Band, played. What a beautiful tribute to her husband.

Learn About Creutzfeldt-Jakob Disease (CJD)

The Alzheimer’s Association explains that Creutzfeldt-Jakob disease exists under the umbrella of prion diseases, or rare brain disorders, sharing:

Prion diseases, such as Creutzfeldt-Jakob disease, occur when prion protein, which is found throughout the body but whose normal function isn’t yet known, begins folding into an abnormal three-dimensional shape. This shape change gradually triggers prion protein in the brain to fold into the same abnormal shape.

This contributes to rapidly progressing dementia. An estimated 1-2 people out of every 1 million will develop CJD each year. It is more prevalent in people over 60 years old. In around 85% of cases, the cause isn’t known. 10-15% of cases are acquired through inherited prion protein genes. Finally, less than 1% of cases are acquired, typically through medical procedures like corneal transplantations or dura mater grafts.

Symptoms differ from person-to-person. If someone has Creutzfeldt-Jakob disease, they may experience:

• Depression, apathy, agitation, or anxiety
• Muscle stiffness
• Involuntary jerking movements
• Problems with thinking, memory, and judgment
• Double vision
• Hallucinations
• Disorientation
• Difficulty walking
• Insomnia
• Difficulty speaking or swallowing

Currently, there is no cure for CJD and, unfortunately, no treatments have been shown to be effective in stopping or slowing disease progression. Most treatments are supportive and focused on comfort management.