Families Call on Government of New Brunswick to Commit to Being Transparent About Mysterious Brain Diseases
HALIFAX – People diagnosed with rare brain disease in New Brunswick say they have been left in the dark and have yet to hear from public health officials about their diagnosis.
Roger Ellis is believed to have suffered from the rare neurological condition for two years, but the 63-year-old has not been officially diagnosed due to the mysterious nature of the disease. He is still awaiting news from the province on his condition.
Roger’s son Steve, who lives in Halifax, watched from afar the deteriorating health of his father, unable to visit his father in New Brunswick for almost a year due to travel restrictions in the event. pandemic.
“Some days it’s very repetitive and very little cognitive, other days we get a glimpse of the old dad,” Steve Ellis told CTV National News.
Ellis is one of 48 other New Brunswick patients being investigated for the mysterious disease. Six people are known to have died from the disease.
Frustrated with the lack of information available and eagerly awaiting to hear from public health on his father’s status, Ellis took to social media to create an online resource where people with symptoms of the disease can to log in.
“We just want to be kept informed, even if that’s not much to say. Keep us posted, ”said Ellis.
New Brunswick’s health minister says people should hear about public health next week.
“No information is withheld, work on the interviews will begin next week,” New Brunswick Health Minister Dorothy Shephard said.
To Ellis’ knowledge, none of the families of the 48 cases have yet been contacted.
Those with a suspected or confirmed case of the disease have all lived or spent an extended period in Moncton, New Brunswick or the Acadian Peninsula. Patients between the ages of 18 and 85, according to the provincial health department.
Symptoms of the unknown neurologic syndrome include rapidly progressing dementia, muscle spasms, and atrophy. Scientists are investigating whether this disease could be caused by food or the environment, given the cluster of New Brunswickers who may be affected. Otherwise, very little is known about the disease.
Many symptoms are similar to known diseases, such as Creutzfeldt-Jakob, Alzheimer’s, Parkinson’s and ALS; however, these diseases were excluded in each case. Doctors say it could be a new disease, but with the number of cases spanning several years, questions remain.
Luc LeBlanc is one of the people who recently received a positive case of the disease.
“It’s really just a ticking time bomb because you don’t know how long you’ve got it,” LeBlanc said.
The 42-year-old father-of-two says he has more questions than answers. He has since taken to social media to learn more about his condition. He eventually found Ellis’ online community of people who were able to speak openly about their condition.
“I never got the answers I was looking for or how to cope or how to extend my life,” said LeBlanc.
New Brunswick health officials launched a website about the disease in April and the province’s health minister says there is enough information online. Family members want the government to reveal the communities where each case is located.
A special clinic has also been established where neurologists from across the country are studying everything from the environment to food for a possible cause of this mysterious disease.
– With files from CTV Atlantic