Caraquet woman shocked she was removed from mystery disease cluster

In 2016 Johanne Boucher started struggling to think of the right words. By 2022, she lost her ability to speak and doesn't know why.

The Caraquet woman was, until recently, part of the group of 48 patients who may have a mystery brain disease that's been under investigation by neurologists and experts.

But on Jan. 12, the 63-year-old received a letter saying the province is no longer considering her case part of the cluster. The letter said her symptoms could be a form of primary progressive aphasia, be related to Parkinson's, or could be a variant of corticobasal degeneration.

"I don't have an answer to my condition. It is nothingness," she told Radio-Canada this week.

The letter recommended she see a neurologist or a behavioural gerontologist, a neuropsychologist and a speech pathologist.

Does a new brain illness even exist?

The mystery syndrome was identified in a March 2021 memo from the office of the chief medical officer of health, which stated, "Preliminary investigation conducted in late 2019/early 2020 determined this to be a distinct atypical neurological syndrome."  

In the memo leaked to Radio-Canada, New Brunswick health-care professionals were advised of a new neurological illness that had affected a cluster of people, including some as young as 18, in the Moncton and Acadian Peninsula regions.

However, in October 2021, Health Minister Dorothy Shephard said that officials were questioning the validity of the theory of an unknown syndrome.

The doubt came after autopsies on eight patients, six of whom were part of the original cluster of 48, indicated they died from known diseases, such as cancer, Lewy body dementia and Alzheimer's disease.

In May of last year, an oversight committee was struck to continue investigating the disease. The letter to Boucher said that oversight committee has concluded she should be removed from the cluster of patients. 

Boucher said she was shocked when she heard the news from her doctor on Wednesday.

"I shouldn't have been kicked out of the group," she said. "I still have an unknown disease."

She said she will try to see a neurologist outside New Brunswick.

The letter has broken her trust in New Brunswick public health, she said.

New Brunswick Public Health has previously said there was no evidence the mystery disease is caused by environmental of food-borne toxin.

Boucher said experts started investigating her case on Sept. 15. She said in the following months, she had no appointments or calls.

The province did not respond to Radio-Canada questions about how many more people, if any, have received a similar letter to Boucher's.

Boucher said while she can't speak, she can still walk, and she's determined to be resilient.

"My illness has stolen my speech, but it won't have my legs," she said.