For the second time in less than a month, a Tennessee family is mourning a loved one who they believe died from Creutzfeldt-Jakob Disease, something doctors say is a one-in-a-million diagnosis.
Tony Gibson, of Nashville, died in January — less than a year after his family said he was diagnosed with CJD.
Five days later, Fayetteville resident Jimmy Hillis told News 2 that his wife, Faron, had also died of the disease. He said Faron was diagnosed with CJD on Jan. 15 and died 10 days later.
Doctors do not believe the cases are connected.
“When it’s a sporadic disease […] sometimes two cases will occur closer together in time,” Dr. William Schaffner of Vanderbilt University Medical Center explained. “I’m not familiar with either of these two cases or the investigation surrounding them, but I’m given to believe there is no connection in the two cases.”
According to Dr. Schaffner, the most common form of CJD is sporadic in nature, and ultimately, doctors have not been able to identify how this form of the disease is contracted.
“It’s such an extraordinary enigma,” Schaffner said. “We don’t know why people get this very strange illness, and it’s caused by a virus kind of agent.”
Creutzfeldt-Jakob Disease primarily affects the brain.
“People don’t think as clearly. They don’t walk very well. They get kind of weak, and then they become demented,” Dr. Schaffner explains. “Once the diagnosis is made, the duration of life is very, very short. It’s an invariably fatal disease.
Schaffner said about 10-percent of CJD cases are genetic, and a tiny percent of cases are the “mad cow” variant caused by eating infected beef.
“CJD, unfortunately, is a very sad disease. Not only is it mysterious in its onset, but it generally progresses very, very rapidly,” Schaffner continued. “It’s usually a matter of a few weeks — not much more than a month or two months — if a person gets the most common for. Then, I’m afraid, the family is in mourning.”
The Tennessee Department of Health says they have had two reported cases of CJD in the past month in Middle Tennessee. From 2010–2017 they had a total of 52 cases of sporadic CJD in Tennessee.
“We have never had a case of variant CJD, sometimes referred to as “mad cow disease,” in Tennessee,” a Dept. of Health representative told News 2. “There have only ever been four cases of variant CJD reported in the U.S., and the last of those was eight years ago.”
The TN Dept. of Health also said final confirmation that a patient has CJD requires specialized testing and the process can take many weeks.
A celebration of life for Faron Hillis will be held tomorrow in Fayetteville. A GoFundMe has been set up to help her family with costs.