Families affected by potential neurological syndrome feel left 'in the dark' by public health
Families of those affected by a potential neurological syndrome in New Brunswick have been seeking answers from the province.
Now, for the first time in several months, New Brunswick’s minister of health provided the public with new information.
With little data brought to light on what could be causing the potential syndrome, family members and patients involved were disappointed with Wednesday’s news conference on the mysterious disease.
During the update, Health Minister Dorothy Shephard announced that there has been no evidence of unknown syndromes identified during the autopsy results of patients. She also said there are no environmental or behavioural exposures linked to the potential syndrome.
Gabrielle Cormier, 20, from Dalhousie, N.B. was told she was diagnosed with the syndrome earlier this year.
Her symptoms include memory loss, vision problems, and the inability to stand for long periods.
Her stepmother Stacie Quigley Cormier says as much as they would like answers, they would prefer to see better communication between patients and public health.
“We feel very much alone and we feel very much in the dark,” said Quigley Cormier.
Cormier suggested that a patient advocate would be helpful so that they could communicate new pieces of information to the families affected.
Quigley Cormier told CTV News that on many occasions they have received information on the syndrome and made aware of updates through the media.
"Our daughter said to me that it’s hard to understand that everyone is getting this information about me, before me or at the same time as me and I agree," said Quigley Cormier.
Green Party MLA Megan Mitton would like to see regular updates provided to the families and the public on the evolving investigation.
"Even though there has not been a conclusion with all of what’s happened, updates such as the one today, to explain the process and keep the families updates need to happen," said Mitton.
Steve Ellis’ father Roger is also one of 48 cases in the cluster. His father suddenly presented with symptoms in 2019. Since the potential unknown syndrome was brought to the public’s attention Ellis has been advocating for other fellow family members of those who have been diagnosed.
"I definitely left the press conference feeling upset and confused. It just goes to show how mismanaged this is."
On Wednesday afternoon Shephard said that each patient will now have six neurologists reviewing their case and they will be sharing the results of the investigation when it becomes available.
However, Ellis says he would prefer the province accept help from outside experts.
"I don’t have confidence that this is being handled in the correct way and unfortunately a lot of people are suffering because of their incompetence," said Ellis.
Family members have expressed that they have been left with more questions than answers, as they try to navigate this deteriorating syndrome.
Minister Shephard said that this process is about doing preliminary work to understand how far they need to go with this and to determine what their next steps are.