GRAND RAPIDS. Mich. (WOOD) — It’s a rare but devastating disease: The few who are diagnosed with Creutzfeldt-Jakob disease are handed a death sentence.
Some local doctors are calling on the medical community to take a closer look at CJD after several cases have cropped up in Michigan.
Jay Mitzner was a husband, father, grandfather, lawyer and a musician. His love for music and playing onboard the Michigan Princess Riverboat on the Grand River in Lansing is why his celebration of life was held on the riverboat last June.
“Jay was an extraordinary person. He was the love of my life. We met kind of later in life. We had 23 wonderful years together,” Carole Colburn, Mitzner’s widow, said.
Twenty-three years wasn’t enough time for Colburn. The love of her life was taken too soon — and very quickly.
“One day Jay said to me, ‘Carole, I feel strange.’ And he kind of cupped his head,” Colburn remembered.
It was early 2022. Mitzner told her his brain felt fuzzy and thought it was a side effect from the new blood pressure drug he had just started taking.
“He started seeing his legs, to him, they looked fat. And he kept saying, ‘My fingers look funny, they look elongated,'” said Colburn.
On their way to an ophthalmologist appointment, Mitzner requested Colburn instead take him to the emergency room.
“We brought him to the ER. They admitted him and that was the beginning of the end, really,” Colburn said.
“CJD is really catastrophic when it happens. Unfortunately, it’s uniformly fatal. No one’s ever survived CJD,” Dr. Nicholas Lannen, a neurologist with Corewell Health, said.
Mitzner was first hospitalized in Lansing, northwest of his home in Ingham County’s Dansville. He was later moved to Corewell Health Blodgett Hospital in East Grand Rapids.
It was a Lansing-area doctor who first brought up the possibility of Mitzner’s still-undiagnosed condition being Creutzfeldt-Jakob disease.
“He (the doctor) said to us it could be Creutzfeldt-Jakob disease. To which we both said, ‘Huh? Like, what is that?’ And his response was, ‘It’s extremely rare and it’s nasty, nasty, nasty, nasty.’ Four nasties,” Colburn said.
“On May 14th, when we got the results from the spinal tap that they did in which they said it was 98% positive for CJD, and at that point they said, ‘You need hospice,'” she continued. “He lived eight days beyond that.”
Dr. Ling Ling Rong is the neurology division chief at Corewell Health. She saw her first patient with CJD in July 2021.
“Within one month, we saw the second case. That made my attention go, ‘What’s going on with this disease here in Michigan?’ Rong said.
Rong and Lannen are two of the names on a case report filed by several West Michigan doctors exploring two clusters of CJD in West Michigan over the span of one year.
“Once we started having these cases and kept tabulation and track, (we realized) we’re kind of defying these one per million odds here,” Lannen said.
“I’m interested to see was anything common. All those five cases occurred in the Grand Rapids 90-miles radius. What’s common to them?” Rong said.
Rong said the report has garnered some attention. And that’s what they need: The medical community to keep CJD top of mind and report other cases.
“I’m hoping that there’s no more cases, but if there are we will be more aware and able to keep a better sense of trend,” Lannen said.
All five patients list in the report died within three months of the time CJD was suspected.
Colburn and family members of three West Michigan patients donated their loved ones’ brains for research. That revealed that all four patients had sporadic CJD.
“Jay was the love of my life and I thought, ‘I have to do something so his death won’t seem like it’s for nothing,'” Colburn said.
Colburn has joined forces with the CJD Foundation and says advocating about and fighting the disease is now her life’s mission.
“I always say to meet Jay was to like him, to get to know him was to love him,” she said. “He was just a great person, an overall great person. I miss him so much.”