A Family’s Second Battle with ALS
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The diary pages held by Christiane Thomas haven’t yellowed with time. In 2008,Amyotrophic Lateral Sclerosis (ALS),also known as charcot’s disease,took the life of her husband,François,after a three-year struggle. But 17 years later, the nightmare continues. Her daughter, Isabelle, was diagnosed with the same disease at age 59. “We would have been better off playing the lottery,” Christiane says,finding it tough to smile.This is the second time this rare neurodegenerative disease has impacted someone close to her. “The whole family is devastated,” she confides,her voice trembling and tears in her eyes. A neighbor also suffered from ALS, passing away in 1999.
The Scope of ALS in France
Five new cases of ALS are diagnosed, and five people die from the disease, every day according to the Association for Research on Amyotrophic Lateral Sclerosis (Arsla). In France, approximately 8,000 people are currently living with ALS. After diagnosis, the average life expectancy is between three and five years.
Vacuuming, climbing the stairs… Everything is hard. I force myself.
20 Years of Fighting
Giving up is not an option for the Thomases. “For 20 years, we have organized events to raise funds. And when my husband died, we held a sale of his belongings, donating the proceeds to research.” For the past three years, Christiane has also presented a play – organized by the company Les bon jours ensemble – with the money raised going to Arsla. €1,000 was donated during the first and second years (totaling €2,000). On October 26th, the public mobilized again, donating €2,500, “taking Isabelle’s situation into account,” Christiane Thomas explains, expressing her “deep gratitude” for the community’s solidarity.
For Isabelle, symptoms appeared almost a year and a half ago. “It was terrible going from the parking lot to my office,” she recalls. “I had a lot of trouble walking and my back hurt.” “Now it’s her voice,” observes her mother. “Vacuuming,walking up the stairs… Everything is hard. I force myself,” Isabelle adds.Though, “she has a lot of will,” Christiane Thomas testifies.Isabelle received her diagnosis on October 1st, following an initial appointment with a neurologist on August 11th and hospitalization on september 4th, which included a lumbar puncture and scans.
She has the same medicine as her dad.
The Challenges of “Slow Medicine”
While Isabelle and her family remain hopeful, she admits that fully enjoying life “isn’t easy.” “Bathing is impossible. I can’t stand up.” The family laments the slow pace of medical advancements, noting that little has changed in the last 20 years. “She has the same medicine as her dad. She’s been taking it for a month. It helps slow down the disease,” Christiane Thomas informs. “We all know we’re going to die, but locked in our body…”
Isabelle requires a monthly blood test “to see if her liver can tolerate” the medication she takes daily. Fortunately, she has the support of her mother and children. “My son started teleworking to come and help me. My daughter, who lives in Hamburg, will be here for a month.” Continued solidarity is crucial to advancing research, and for that, “donations are needed,” Christiane Thomas adds. Donations can be made on the Arsla website.
Publication Date: 2025/11/02 18:23:16