- At least 48 people in Canada have come down with symptoms indicative of a brain disease.
- Episodes of pain are often followed by trouble walking, speaking, or performing basic tasks.
- Officials say they've ruled out environmental causes and human transmission, but they don't have a diagnosis yet.
Dozens of New Brunswick residents have been struck with mysterious symptoms that point to a degenerative brain disorder, and authorities still don't have an explanation for the debilitating illness.
A report leaked in March 2021 noted a cluster of cases of what looked like Creutzfeldt-Jakob disease: spasms, memory loss, hallucinations, and severe weight loss as the condition keeps people from being active.
At the time, 48 cases had been identified, with symptoms starting between 2013 and 2020. However, a separate whistleblower from one of New Brunswick's health authorities told the Guardian that the mysterious illness had affected close to 150 by January 2022, and that many of those who got sick were young, previously healthy adults.
An investigation into the cases, previously headed by Canadian federal scientists, has lagged since it fell on the province. Provincial officials have promised to publish another report about the cases soon, but the public as well as patients and families are still awaiting information, Leyland Cecco wrote for The Guardian.
But there's still no report, and the case data on New Brunswick's public health website hasn't been updated since May 2021. People sickened with the illness don't even know what to call it, as there's no name or official diagnosis for the mysterious neurological disease.
Leg pain that turned into vision loss was diagnosed as PTSD
For Terriline Porelle, it began with an "electric shock" pain in her leg during the summer of 2020, she told the Guardian. The pain crept up her arms and to her face in the days that followed. Soon, the 33-year-old's vision was like that of a 70-year-old, one optometrist told her.
One day, Porelle forgot how to write the letter "Q," and she went to a doctor for a brain scan. It came back normal, and provincial officials referred her to a neuropsychologist.
The specialist told Porelle she likely had PTSD. But Porelle has faced mental health challenges before, and she said the symptoms she has now are nothing like the anxiety and depression she's had in the past. She still struggles with declining mental function and says she relies on her partner for help with daily tasks.
"We've been given no resources from the government and no help," she said. "I don't know what to do. I try to keep positive, but it's hard. There are days when I don't know if I should even bother saving for retirement. Am I even going to live that long?"
Patients worry the investigation has slowed down
The January whisteblower told the Guardian that many cases with the symptom cluster have yet to be processed by the province, and many of the cases in backlog are among young people.
Of the cases reported so far, ages have ranged from 18 to 85. Nine people with illness have died, although the province notes that six of those individuals died of other known causes.
Previously, officials investigated and ruled out several environmental factors that could be causing the illness: blue-green algae, toxicity in shellfish, chronic wasting disease, or a toxic herbicide. None of the explanations have stuck, and some of the early patients have been left out of the loop.
Johanne Boucher, 63, told the Guardian she recently received a letter that said investigators would no longer be looking into her case. They suggested that she get some more tests — tests she said she had already taken — because her symptoms could be explained by Parkinson's disease or another form of brain degeneration.
For Boucher, who "can't even order a coffee" after completely losing her speech in late 2021, the news came as a shock. Her ability to speak deteriorated over four years, and she still doesn't have an explanation.