Doctors in New Brunswick have been coming across patients showing symptoms similar to that of Creutzfeldt-Jakob disease, a rare fatal condition that attacks the brain, and the Green Party is demanding total transparency on any new information.
BBC News interviewed Dr. Alier Marrero, the neurologist with Moncton’s Dr. Georges-L-Dumont University Hospital Centre. Dr. Alier Marrero, says that doctors first came across the baffling disease in 2015. At the time it was one patient, an “isolated and atypical case”, he says. But since then there have been more patients like the first. The province says it’s currently tracking 48 cases, evenly split between men and women, in ages ranging from 18 to 85. Six people are believed to have died from the illness.
New Brunswick has dealt relatively well against the coronavirus, but the scientists and doctors who are investigating the new syndrome say the coronavirus has slowed their work. New Brunswick’s travel restrictions and quarantine rules have complicated efforts to get epidemiologists on the ground to take environmental samples and interview residents.
Although the syndrome is still under investigation, residents of New Brunswick were only apprised of the situation when Radio-Canada obtained a memo from the Public Health Center in New Brunswick to medical professionals.
On March 5th, Radio-Canada revealed that the memo noted that 43 cases of the disease had been identified so far and that five people had died. The case count has since risen to 44 and the death toll to six. For 3 weeks after the memo was released Public Health did not provide any public updates, did not hold any information sessions in the affected communities or elsewhere, and did not issue any news releases regarding the mystery disease cases.
The number of people upset with the government’s silence on the mystery disease is growing exponentially, and New Brunswick’s Green Party decided to take a stand. On Friday, May 21st, Green Party Leader David Coon called on the province of New Brunswick to be more transparent when it comes to providing information about the neurological syndrome.
“Something doesn’t feel right about the discussion of the unknown neurodegenerative disease that has plagued 48 New Brunswickers and killed 6 to date,” said Coon. “CJD (Creutzfeldt–Jakob disease) was ruled out 12 months ago, but public health is only beginning its investigation.”
On Thursday, Megan Mitton, a Green Party member, participated virtually in the legislature. Mitton asked the Minister of Health to provide a public briefing within the next week to inform the public.
“When people say we’re not being transparent as the opposition indicated today, I need them to understand that we are being as transparent with every bit of information we know,” said Minister Shephard.
Patients experience many different symptoms. Frequently, patients develop difficulties sleeping (severe insomnia or hypersomnia) and memory problems. There can be fast-advancing language impairments that make it challenging to communicate and hold a fluent conversation with stuttering or word repetition issues.
Many have experienced blurred vision, memory problems, teeth chattering, hair loss and trouble with balance. Some are in palliative care, are administered strong medications, and suffer from uncontrollable muscle jerks. Others have rapid and unexplained weight loss and muscle atrophy. One symptom, particularly devastating for loved ones, is Capgras delusion, a belief that family members have been replaced by impostors.
Scientists are looking at the possibility of whether this disease could be caused by food or the environment, considering the cluster of New Brunswickers who may have it. Otherwise, very little is known about the illness.