Thil. He suffers from Creutzfeldt-Jakob disease, his family, "distraught", seeks help

"It started in September 2024 with a diagnosis of depression from the family doctor. My husband stayed on the couch, in front of the TV, and no longer went cycling. One day, he took the wrong route home. The situation deteriorated from November when he noticed speech problems, then confusion ," says Béatrice Moulin, wife of Jean-Luc Moulin. At 64, he suffers from Creutzfeldt-Jakob disease.

Several tests and visits to specialists were necessary before the diagnosis was made in April 2025. "An electroencephalogram, an MRI, a CT scan and a lumbar puncture confirmed the disease with a result that was given to us three months later. It is a sporadic form of the disease with no possible medical treatment at the moment ." A former foreman at the Toray company, the possibility of an occupational disease was ruled out.

The disease is characterized by a significant loss of autonomy marked by constant wandering, which requires continuous and adapted monitoring of the patient for better end-of-life care. Béatrice Moulin is currently looking for a place to accommodate her husband so that she can rest.

"I can count on Bernard, Geneviève, and Mireille, Jean-Luc's brother and sisters, on his friends, and also on our children. Always accompanied, he can still go for walks. A home help comes to provide care. I'm looking for a place to accommodate him temporarily, even one day a week. I have a lead in Sainte-Croix to do a trial in September."

Currently on phased retirement, Béatrice Moulin has taken sick leave. Considered a caregiver, she is eligible for additional leave, but with no certainty about her request. "The medical expert still hasn't sent a certificate, which is blocking the administrative process to try to find a solution to my requests."

The life expectancy of these patients is short, Jean-Luc Moulin can count on his family for unfailing support with the hope of finding a solution to offer moments of respite to Béatrice.

"We are also looking for people whose loved ones are affected by this disease. We would like to find answers to our questions, our doubts, and we are helpless in the face of this rare disease," says Geneviève, one of Jean-Luc Moulin's sisters.

Contact: Bernard Moulin at 06.95.62.80.86. Info: www.diseasesraresinfo.org.