Widow sheds light on CJD after rare disease takes Michigan man’s life

MASON, Mich. (WILX) - A Mid-Michigan man has lost his life to a rare and devastating disease known as Creutzfeldt-Jakob disease (CJD).

His wife is speaking out to raise awareness about the little-known illness.

“It’s a one-in-a-million diagnosis,” said Carole Colburn.

Jay Mitzner was a retired lawyer who enjoyed playing with his band, the Bayou River Band, on the Michigan Princess Riverboat. He was diagnosed with CJD in May 2022 and six weeks later, he died.

CJD is characterized by the formation of lesions on the brain, leading to a rapid decline in cognitive abilities. Doctors are still unsure what causes the disease if anything at all.

“Jay’s was sporadic, he had a subtype of sporadic called Heidenhain Variant, and that is a one-in-a-million disease,” Colburn said. “He had the most uncommon of the variants that is the most aggressive and fastest progressing.”

Colburn said she still feels his presence and is sure he would be proud of all she is doing to raise awareness about the disease.

“Jay was the love of my life. We came together late in life, but we had 23 of the most wonderful years that I could ever ask for, and I miss him every minute,” Colburn said. “Although I feel him like he’s here, he was in my dreams this morning, so I kind of feel like he hasn’t really left.”

Colburn has become involved with the National CJD Organization and advocates for increased research funding for all rare diseases.

“Because it’s an orphan disease, doesn’t mean there shouldn’t be research,” Colburn said. “The truth is, if there’s money and people doing research for CJD they may find answers for diseases like Parkinson’s or Lewy body dementia or the folks doing research for that might end up finding answers for CJD.”

CJD still has no known cure and its symptoms can easily be mistaken for Alzheimer’s disease or Lewy body dementia, further complicating early diagnosis and treatment.

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