A mum and grandma from Michigan died from a rare degenerative brain disease - which so far has a 100% fatality rate.
Arlene VonMyhr was celebrating the University of Michigan winning a national championship with her husband, Gary, on January 8. However, during that night the 55-year-old woke up displaying symptoms similar to a stroke.
She was initially sent home by doctors but over the following two weeks Arlene was rushed to hospital on four separate occasions suffering from slurred speech and balance issues. On January 26 she made her fourth visit and would never leave the hospital again.
Arlene with her 'high school sweetheart' husband Gary (Facebook)Her high school sweetheart and husband of 34 years told Michigan Live: "It was a really rapid five weeks of decline." Eventually, on January 31, tests found that Arlene had fallen victim to a rare degenerative brain disease called Creutzfeldt-Jakob Disease (CJD).
There is currently no cure or treatment for the condition and, after inflicting older adults mostly at random, to date it has always been fatal. Gary said: "Once a definitive diagnosis came back to CJD, then at that point they stopped all the treatments and the IV because there wasn’t anything they could do for her,” before adding that, “it was all about comfort and dignity at that point.”
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Gary is now trying to raise awareness of CJD to further research of it (Facebook)The mum-of-two, who had three grandchildren, died on February 19 after Michigan's Corewell Health saw five cases of CJD in just one year, prompting an “urgent investigation” from doctors. CJD - from the same family as Bovine Spongiform Encephalopathy (BSE), commonly known as mad cow disease - is an aggressive brain disorder causing dementia with symptoms such as memory loss, trouble speaking, balance issues and jerky movements.
Roughly 85% of CJD cases have no seeming cause and the majority of the other cases come from a genetic mutation of a prion protein. Brian Appleby, director of the National Prion Disease Pathology Surveillance Center, said: "For almost everyone, unfortunately, it’s an extremely rapid course."
CJD afflicts mostly older adults and is from the same family of 'mad cow' disease (Gamma-Rapho via Getty Images)For all the latest news, politics, sports, and showbiz from the USA, go to The Mirror US
He added that protein misfolding is believed to be a “random chance event" and that "it causes brain damage. It causes brain cells to die. And we don’t necessarily understand why." CJD affects one to two people per one million a year in the US. Brian offered an alternative view of the disease's frequency: one in every 6,000 deaths in the US are due to CJD.
The Corewell Health case report, published in a neurology journal last April, detailed the five patients seen from July 2021 to June 2022 with the US Centers for Disease Control being aware of it, noting “several cases of sporadic CJD may occasionally be diagnosed in a particular area around the same time due purely to chance,” according to epidemiologist Ryan Maddox.
Gary, who is now trying to raise awareness of the disease so to help further its research, recalled the fear and anxiety of not knowing what was wrong with his wife. “This obviously doesn’t impact as many people but it’s so aggressive, so debilitating, so impactful. The ultimate motivation would certainly be finding a cure," he hoped.
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