MONCTON, N.B. — On Wednesday, many New Brunswick families and patients diagnosed with a potential neurological syndrome were anxiously awaiting answers on what could be causing their loved ones to deteriorate.
"It's very discouraging and frustrating," said Steve Ellis, the son of one of the patients.
Steve Ellis believes it will be quite some time before he finds out the exact cause of his father's neurological symptoms.
"I worry that he's not going to be around for the finish of this review because it's going so slow," Ellis said. "My dad has been sick for quite some time, and I feel like time is running out for him."
According to a document provided by the Epidemiology and Surveillance Branch of Public Health New Brunswick, nine individuals in the cluster have died as of September. Four of those patients died this year.
There has been no evidence of unknown syndromes identified in autopsy results, said Minister of Health Dorothy Shephard.
Since April 2021, 48 people were identified to have symptoms related to CJD. However, these patients tested negative for known forms of prion diseases.
Nearly six months after the oversight committee was created, New Brunswick Health Minister Dorothy Shephard said they are getting closer to a "determination."
However, public health is now questioning the validity of the unknown illness which has left families confused and worried for what's to come.
"Of course we want answers, but we want humanity, kindness, we want communication," said Stacie Quigley Cormier, Gabrielle Cormier's step-mom. "We want information to say 'we're on it, we got it.' At every turn that's not what we've received."
She and others affected have repeatedly said that they have had little to no information provided to them by public health. Quigley said they weren’t aware of Wednesday’s update by the province until it was made public by the media.
While Shephard said that she is committed to providing information to families once it is validated.
The 20-year-old Cormier is one of the youngest cases in the cluster. Quigley-Cormier says Gabrielle has been checking things off her bucket list, as her condition continues to worsen.
"I'm just imploring at this point ... (pauses to cry) that we're allowed to get some kind of information," Quigley-Cormier said.
Shephard said that public health is committed to providing information to families once it is validated.
Each case will be reviewed by six neurologists involved in the oversight committee, which will complete its review early next year.
