UM atUM [S03-ep17]: Educational Pathways and Career Development with Cystic Fibrosis
This week on *AUM science*, Laura Silvestri and Sylvain Ferez from the Santesih laboratory join us to discuss their book *L’ombre du handicap*. Our last-minute guest is Agnès Pesenti, head of science outreach atUM will introduce the upcoming science bar. A program co-produced with Divergence FM and broadcast every Wednesday at 6 p.m. on 93.9.
In France, more than 6,800 people live with cystic fibrosis. This potentially serious genetic disease affects respiratory, digestive, and possibly reproductive functions and can cause debilitating symptoms, such as a cough that progresses to respiratory failure, high susceptibility to bacterial infections, digestive problems, pancreatic insufficiency, and even damage to the liver and gallbladder. In the 1960s, the life expectancy of a child with cystic fibrosis did not exceed 5 years on average.
Since the 2000s, care for patients has improved significantly, largely thanks to routine newborn screening and the establishment of 49 cystic fibrosis resource and expertise centers. The life expectancy of a child born today with this disease is between 40 and 50 years and is expected to continue to improve in the coming years.
While these advances are clearly a blessing, they also raise new challenges for patients as they begin to envision their future—including their education, professional career, and family life. This raises the question of access to social participation and how it can be reconciled with symptom management. The transition from adolescence to adulthood is, in this regard, a particularly unsettling time for young people with cystic fibrosis—a time when their perception of their environment and the barriers to social participation can significantly impact disease management.
Our guests are sociologists at the Santesih research center. They have published a book titled *The Shadow of Disability*, based on an 18-month study of adolescents and young adults with cystic fibrosis, aimed at better understanding the barriers and enablers to social participation they encounter at school or in the workplace.
At the end of the program, Agnès Pesenti, head of science outreach atUM the next Science Bar, which will be held at the Dôme on February 29 on the topic: “Palavas Underwater: Science Fiction or Reality?”
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Co-production: Divergence FM / University of Montpellier
Host: Lucie Lecherbonnier
Interview: Aline Périault / Lucie Lecherbonnier
Production: Alice Rollet
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