First there was her partner, then everyone else she heard about. Struck by the number of cases of amyotrophic lateral sclerosis (ALS) near Windsor, in Estrie, Julie Dubois convinced Public Health to take an interest in it. Close-up on this long-term investigation.
Published at 6:00 a.m.
What is ALS?
Also called Lou Gehrig’s disease, ALS is a neurodegenerative disease for which there is no cure. Eight out of ten patients die two to five years after diagnosis. The spouse of Mme Dubois, Marco Brindle, has been ill for a little over three years. He died last January, at age 61. “He was rendered quadriplegic, with assistance in breathing. The only thing that still worked in his body was his speech,” says M.me Dubois on the phone.
What is happening in Estrie?
Since her partner passed away, Mme Dubois learned of three other cases of ALS “within a five kilometer radius” in 2024. Over a longer period, she “listed, by word of mouth, 18 people” near Windsor and Richmond. Including the rest of the MRC of Val-Saint-François and Sherbrooke, it has “more than fifty names”.
PHOTO PROVIDED BY JULIE DUBOIS
Marco Brindle and Julie Dubois, before illness struck him, in 2019
Is it a lot?
The disease affects two to five people per 100,000 inhabitants, notes the Dre Angela Genge, director of the ALS clinic at The Neuro (Montreal Neurological Institute-Hospital). Windsor and Richmond have a total of just over 6,000 inhabitants. “The first step is to check if there are actually more people affected than what could be expected for this community,” indicated the Estrie Public Health Department by email. In particular, it is necessary to “determine whether the cluster of cases comes from one or two families affected by a genetic form of ALS [responsable de] 10 to 15% of cases,” specifies the Dre Genge, who will be a contact person for the investigation.
PHOTO ANDRE PICHETTE, THE ANDRE PICHETTE PRESS
The director of the ALS clinic at the Neuro (Montreal Neurological Institute-Hospital), Dr.re Angela Gang
When will we be fixed?
Checking whether there are more cases than normal will take several weeks. Then, it will be necessary to see if it is possible to carry out “a more in-depth study [pour] explore potential environmental causes,” writes Public Health. Such a study could last “several years”.
Does ALS have known industrial causes?
No, “it has not been reported in the literature”, replies the Dre Genge. Studies have focused on American football and Italian soccer players, the American army and exposure to cyanobacteria from lakes in the northeastern United States, but the causes remain hypothetical. .
Is it a good idea to investigate?
“I was very happy that they took it seriously because it shows that they understand the importance of it,” agrees the Dre Genge. “I’m like Marco: there is a solution, there is an answer somewhere, we have to look because if we don’t move forward, nothing will happen,” pleads Mme Dubois.
