The New Brunswick government has launched a website to update the public on a mysterious brain disease that has affected at least 47 people and killed six.
According to the New Brunswick Health Department, the first case dates to 2015, but it wasn’t identified until early 2020. That’s when a cluster of cases was detected by the Creutzfeldt-Jakob Disease Surveillance System, operated by the Public Health Agency of Canada.
The agency conducts national surveillance for prion diseases such as Creutzfeldt-Jakob disease that cause neurological symptoms.
However, investigators have so far ruled out CJD and other prion diseases as the cause of the New Brunswick cluster.
“At this time, the investigation is active and ongoing to determine if there are similarities among the reported cases that can identify potential causes for this syndrome, and to help identify possible strategies for prevention,” the website states. “The investigation team is exploring all potential causes including food, environmental and animal exposures.”
The website, which went live Tuesday evening, details what is known so far about the illness and the range of symptoms including memory problems, muscle spasms and visual hallucinations.
Fifty-one per cent of the cases have involved women and 49 per cent men, and it says the age range has been 18 to 85.
Most of the cases have been located in the northeast and southeast of the province in the Acadian Peninsula and Moncton areas.
“However, so far our investigation has not found any evidence suggesting that the residents of these regions are more at risk than those living elsewhere in the province,” the website states.
Families of the affected patients, some of whom have complained about a lack of information, welcomed the creation of the website.
“I’m happy that there’s now a vessel to give updates,” said Steve Ellis, who has started a support group on Facebook for families of the affected patients. His father, Roger Ellis, 63 of Bathurst, N.B., is one of the suspected cases.
But Mr. Ellis said the families want the government to name the exact communities where each case is located. “I don’t think there is harm in sharing this information. It’s not going to identify anybody,” he said.
Mr. Ellis said he’s heard from mayors in the Acadian Peninsula who want to know if the mystery illness is in their communities.
On Tuesday, a spokesman for the Health Department confirmed that there were 37 confirmed cases and 10 suspected cases in the province. That breakdown is not included on the website, and Mr. Ellis says it should be.
Still, Mr. Ellis said the website provides a link for affected families and a way to know they are not alone. He hopes the government will be transparent as new details emerge.
“This is a great first step, and I’m very glad that they kept their word,” Mr. Ellis said.
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