The Estrie region of Quebec is under scrutiny as health officials investigate what appears to be an alarming increase in cases of amyotrophic lateral sclerosis (ALS). Julie Dubois, who tragically lost her husband Marco Brindle to this devastating neurodegenerative disease earlier this year, has raised the alarm after discovering numerous cases of ALS reported by local residents.
Brindle passed away from ALS in January 2023 at the age of 61, leaving behind his wife and four children. His condition compelled Dubois to connect with others facing similar circumstances within their community, leading her to compile extensive statistics—she estimates at least 18 people afflicted with ALS have been recorded solely within the Windsor area.
Dubois recalls her reaction when specialists at the Montreal Neurological Institute began asking about her husband’s residency: "Les questionnements ont commencé quand on est allé visiter la clinique de neurologie à Montréal. La première question qu’ils ont posée à Marco, c’est s’il habitait dans les Cantons-de-l’Est" ("The questioning began when we visited the neurology clinic in Montreal. The first question they asked Marco was if he lived in the Eastern Townships").
The public health authorities took notice after Dubois formally reported her finding of high case numbers, prompting Dr. Guillaume Vandal, a specialist from the health department, to explain the nature of the investigation. "L’objectif de l’enquête est d’aller évaluer s’il pourrait y avoir une cause environnementale derrière les cas de Sclérose latérale amyotrophique" ("The objective of the investigation is to assess whether there could be an environmental cause behind the cases of amyotrophic lateral sclerosis").
ALS, also known as Lou Gehrig's disease, affects nerve cells, leading to severe muscle atrophy and loss of motor functions, often culminating in death within two to five years post-diagnosis. Presently, approximately 600 Quebec residents are diagnosed with this illness, with about 3,000 cases reported across Canada.
During winter months, Dubois utilized social media to gather information on residents afflicted by ALS or those who have succumbed to it, raising her concerns about the rising number of cases. "Je travaille avec l’Institut neurologique de Montréal à nous questionner sur la provenance et les causes de cette maladie" ("I am working with the Montreal Neurological Institute to question the origins and causes of this disease"), he stated, highlighting efforts to create comprehensive local statistics.
This impending investigation, according to Dr. Vandal, will be extensive and complex, involving validating the cases presented by Dubois, locating additional cases, and exploring common characteristics among them. The potential for environmental links will also be considered. Vandal noted, "C’est une démarche très complexe qui nécessitera des expertises médicale, géographique, toxicologique et épidémiologique" ("It's a very complex process requiring medical, geographical, toxicological, and epidemiological expertise").
Dr. Angela Genge, director of the ALS clinic at the Montreal Neurological Institute, has also been enlisted as a consultant for the investigation. She emphasizes the importance of Dubois' findings, stating, "C’est absolument nécessaire de mener cette enquête basée sur ce qu’elle a découvert parce que les cas sont anormalement près l’un de l’autre" ("It is absolutely necessary to conduct this investigation based on what she has discovered because the cases are unusually close to one another").
Dubois is optimistic about the public health response, expressing satisfaction over the investigation's initiation. "Je suis contente parce qu’enfin on va peut-être savoir ce qui se passe dans notre coin et ça va peut-être aider aussi à faire avancer la recherche" ("I'm happy because finally we may find out what is happening in our area, and it may also help advance research").
The impact of these findings reaches beyond Windsor, as community members begin to rally for answers. Among them is Serge Lebrun, who has been grappling with his own ALS diagnosis. Upon learning the statistics Dubois collected, he expressed disbelief and concern. "C’est un coup de masse en plein front quand tu te fais dire que tu es atteint de ça et qu’il n’y a pas de médicaments pour guérir" ("It's like taking a massive blow to the face when you are told you have this condition and there's no cure").
Dr. Vandal has assured the public they do not need to report individual cases of ALS to the health department, stating, "Les gens n’ont pas besoin de nous appeler. On va commencer comme je le disais par les cas qui nous ont été soumis" ("People do not need to call us. We will start with the cases submitted to us"). He remarked they would also begin exploring various existing databases to identify more cases as the investigation proceeds.
This investigation illuminates the pressing need to understand ALS's increase within regions like Estrie, and the results could have significant repercussions not only for local communities but for ALS research and awareness at large.
