Five hundred people in a small Canadian province were diagnosed with a mystery brain disease. What would it mean for the patients if the disease was never real?
In early 2019, officials at a hospital in the small Canadian province of New Brunswick noticed that two patients had contracted an extremely rare brain condition known as Creutzfeldt-Jakob Disease, or CJD. CJD is both fatal and potentially contagious, so a group of experts was quickly assembled to investigate. Fortunately for New Brunswick, the disease didn't spread. But the story didn't end there. In fact, it was just beginning.
Among the experts was Alier Marrero, a soft-spoken, Cuban-born neurologist who had been working in the province for about six years. Marrero would share some worrying information with the other members of the group. He had been seeing patients with unexplained CJD-like symptoms for several years, he said, including young people who showed signs of a rapidly progressing dementia. The number of cases was already more than 20, Marrero said, and several patients had already died.
Because of the apparent similarity to CJD, Marrero had been reporting these cases to Canada's Creutzfeldt-Jakob Disease Surveillance System, or CJDSS. But the results had been coming back negative. Marrero was stumped.
More worrying still, he was seeing a dizzying array of symptoms among the patients according to his notes. There were cases of dementia, weight loss, unsteadiness, jerking movements, and facial twitches. Many said they were suffering from both insomnia and waking hallucinations. Others appeared to lose the ability to speak. One patient reported that she had forgotten how to write the letter Q.
Over the next five years, the cluster would balloon from 20 to an astonishing 500. Yet, while the number of patients surged, there were no scientific breakthroughs or new understanding of the condition. A bombshell research paper published last year concluded that no mysterious disease existed, suggesting patients suffered from known conditions instead. This dismissal triggered outrage among patients and advocates, who argue that their experiences and claims of industrial toxicity have been ignored.
Dr. Marrero remains a focal point as diagnosis, accountability, and the search for answers continue to create a tumultuous environment for both patients who feel let down and a medical community striving for clarity. As new findings emerge, will the truth behind New Brunswick's neurological syndrome ever be fully uncovered?
