OTSEGO, Mich. (WOOD) — After a battle in the ICU, Otsego Mayor Cyndi Trobeck died this past Monday. She had been fighting a disease that was a mystery to doctors for months. 

The City of Otsego confirmed that she died of Creutzfeldt-Jakob Disease. It’s an extremely rare, always fatal illness. It took doctors months to diagnose her with this disease. 

Dr. Larry Morgan, who works in Neurocritical Care at the Bronson Neuroscience Center, said part of the reason it can take so long to diagnose is how rare the illness is. 

“There are a lot of other explanations for some of the symptoms that someone might present with,” Morgan said. “This is going to be way down on the list of possibilities. So you’re crossing off all these other problems that are far more common, for more likely to be it, before you’re going to get down to there.”

It came out of nowhere, when Trobeck started losing her eyesight last December. Her condition rapidly deteriorated, as she suffered tremors, seizures and dementia.   

“It just all happened so incredibly quickly that it was hard to wrap your mind around,” Anthony Trobeck, Cyndi Trobeck’s son, told News 8 in February.

The mayor was transferred to the ICU at Cleveland Clinic, where she required a ventilator and a feeding tube.

She died Monday morning at the age of 63.

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Dr. Nicholas Lannen, a Spectrum Health neurology specialist unaffiliated with the case, said it’s a “catastrophic and rapidly progressing disease.” 

Morgan said it starts with a protein that folds itself, triggering other proteins to do the same. Proteins gain their function based on how they’re folded, he said. 

“You end up in a scenario where all the proteins do this, and it causes damage that’s not reversible,” Morgan said. 

Lannen added that her neurogenerative disorder was likely sporadic, happening for no apparent reason.

“There are some that occur randomly just for a spontaneous reason,” he said. “That’s thought to be the most common type. Like 80%.”

Some cases are inherited. Doctors said another type is infectious, similar to mad cow disease. That’s less than 1% of cases. It comes from eating infected meat.

“They’re all under the same classification what we call prion diseases,” Morgan said. “It’s true they’re all in the same family, but the type of prion disease that affects humans tends to be different than that of mad cow.” 

Getting the illness from meat is extremely unlikely, doctors said.

“It’s possible to get the transmissible form from cows, but that’s something that hasn’t happened for a very long time now since there are really good guidelines in place from meat factories,” Morgan said.

“Extremely negligible,” Lannen added. “We have highly regulated food industries in the United States that are always on the lookout. Her case, I’m sure, will be sent to the CDC. But most likely based off the information I have it sounds like it’s a sporadic form.”

The CDC said this affects one in every million people.

“This isn’t something that I would lose sleep over,” Morgan said. “This is so rare that it’s exceptionally unlikely that you’re going to develop it.”

Lannen said the sporadic version of the disease happens later in life, typically in someone’s 70s or 80s. Ninety percent of patients die within a year, although some have beaten the odds and lived longer.