Rare disease hits close to home

Douglas County resident has been diagnosed with deadly brain disorder

Gale Armbrister, a longtime Douglas County resident, has been diagnosed with sporadic Creutzfeldt-Jakob disease, a deadly brain disorder that strikes about one person in a million and is often confused with mad cow disease.

“It has some symptoms that are similar to mad cow, but it’s very inaccurate to call it mad cow,” said Armbrister’s son, Matt.

“This has been going on for several weeks,” Armbrister said. “My father is declining.”

Gale Armbrister, 60, was moved to a Kansas City-area nursing home earlier this week.

“He’s still functional,” said Matt Armbrister, noting that Creutzfeldt-Jakob disease is terminal. There is no cure.

“We’ve been told it could be up to six months,” he said.

Gale Armbrister, shown here with his granddaughters, Carly and Baily Armbrister, has been diagnosed with sporadic Creutzfeldt-Jakob disease, a deadly brain disorder. The girls are the daughters of Jay and Betsy Armbrister, of Baldwin.

Gale Armbrister retired in February 1999 from Hallmark Cards in Lawrence, where he had been a supervisor for more than 25 years. His wife, Cheri, has been a nurse at Lawrence Memorial Hospital for more than 30 years.

Gale Armbrister has been involved in American Legion baseball and other youth activities for many years in Lawrence and Baldwin. He recently began substitute teaching in Baldwin.

Creutzfeldt-Jakob disease – best known by its acronym, CJD – is part of a group of rare brain disorders known as prion diseases that affect humans and animals.

“It’s not something you contract,” Matt Armbrister said. “It’s not a virus. It’s a malformed protein in the brain.”

According to the Ohio-based CJD Foundation, CJD strikes roughly one out of a million people.

“But that number is deceptive,” said CJD Foundation President Florence Kranitz, “because CJD is often underreported and underdiagnosed, and it doesn’t affect infants, children or young adults – so for adults over 55, we think the number is closer to one in 9,000.”

Matt Armbrister said his father’s condition was diagnosed early because his neurologist, Dr. Sanjeev Kumar, had encountered a case earlier in his practice.

Varieties of CJD

Generally, there are four varieties of Creutzfeldt-Jakob disease known to affect humans:

¢ Familial is thought to be inherited.

¢ Iatrogenic is contracted through the sharing of infectious tissue, usually during transplant surgeries.

¢ Variant is associated with eating beef or beef products with bovine spongiform encephalopathy, which has been called mad cow disease.

¢ Sporadic. Its cause is unknown. Sporadic CJD accounts for 85 percent of the known CJD cases.

Source: CJD Foundation

“Many neurologists won’t see a case of CJD in their entire careers,” Matt Armbrister said. Kumar, he said, consulted neurologists at Kansas University Medical Center and at Mayo Clinic.

Armbrister asked well-wishers to respect the family’s privacy.

“This is a stressful time for us right now,” he said. “We appreciate everybody’s thoughts and prayers, but my family is not is a position to be taking a bunch of phone calls or having a bunch of people coming by.”

The family decided to share their story with the public because they wanted to raise awareness of the malady.

The couple have another son, Jay, 29. He lives in Baldwin.

Dale Armbrister’s mother, Ethel Armbrister, brother, Jackson Armbrister, and sister, Patty Johnston, live in Lawrence.