Young People in New Brunswick Are Getting a Serious Brain Disease and Nobody Knows Why

A mysterious and fatal neurological syndrome that currently has no known cause or cure has afflicted at least 48 people, including nine young people, in eastern Canada. The illness has allegedly killed nine patients.

One still-suffering patient, Terriline Porelle, told CBC her issues started in the summer of 2020 when she felt a sharp pain akin to a pinched nerve in her leg. Today, the 33-year-old struggles to make her way through her house, often bumping into walls and doors. She suffers from brain fog so bad that at one point she couldn’t remember how to draw the letter “Q.”

"I tried my best, and I did a circle with just a line on the top. It looked like an apple. That was my red flag,” Porelle told CBC. 

The patients—a fifth of whom are under the age of 40—live in New Brunswick and have displayed a range of symptoms that include muscle spasms, rapid weight loss, hallucinations, trouble sleeping, imbalance, and dementia-like memory loss. The onset of symptoms is relatively mild before they become increasingly severe. 

Gabrielle Cormier, who was diagnosed at 20, told reporters she’s suffering from memory loss, can’t read, has vision problems, and is unable to stand or walk for long periods of time. Today, she uses either a cane or a wheelchair to get around, and she had to drop out of university. 

“I can’t read, which is a shame because I love to read. I can’t move, which is a shame because I was very active before,” Cormier told CTV.

The mystery was first flagged to New Brunswick’s chief medical officer in December 2020 by Canada’s public health agency after it detected an uncharacteristically high number of patients suffering from an illness that was similar to Creutzfeldt-Jakob disease, a fatal degenerative brain disorder that causes dementia, but wasn't. The case has since baffled experts, and in June of last year, the province started to refer to the illness as a “potential” syndrome, according to the CBC.

In October, provincial officials released their first round of findings based on surveys answered by many of the patients. The survey asked about eating habits, work history, and other activities to determine whether environmental or infectious sources could be to blame. 

They ultimately ruled out environmental, food, or behavioural exposures that could trigger the illness, with New Brunswick Health Minister Dorothy Shephard going so far as to say that the mysterious illness may not be anything at all. “I also believe public health has significant reason to question the validity of an unknown neurological illness,” she said. 

Shephard also distanced the investigation from Moncton neurologist Dr. Alier Marrero, who identified 46 of the 48 cases and is still caring for some of the patients. (Multiple experts  believe the number of people suffering is actually much higher than 48, and Marrero told CBC he is treating over 100 patients.) 

At the same time, a controversial study published without first informing families of the deceased and released by the Canadian Association of Neuropathologists suggested the eight people who had died by publication were likely misdiagnosed and actually suffered from distinct and unrelated illnesses like cancer, frontotemporal degeneration, vascular disease, and Alzheimer's.

Experts, including Marrero, said it’s too soon to write off the presence of a mystery illness. 

Another report from the province is expected in the next few weeks and some speculate that New Brunswick health officials will likely try and rule out a mysterious illness altogether. But a whistleblower who works for one of New Brunswick’s health authorities, Vitalité Health Network, recently told the Guardian cases are growing in number and young people with no prior health conditions or exposure to triggers are becoming increasingly sick. 

“I’m truly concerned about these cases because they seem to evolve so fast… I’m worried for them and we owe them some kind of explanation,” said the source. 

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