"UM : Science" [S03-ep17]: Educational Pathways and Career Development for People with Cystic Fibrosis
This week on *A l’UM * 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 at the *UM *, who 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 liver and gallbladder damage. In the 1960s, the average life expectancy of a child with cystic fibrosis did not exceed 5 years.
Since the 2000s, patient care has improved significantly, thanks in large part to routine neonatal screening and the establishment of 49 cystic fibrosis resource and specialty 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 this progress is clearly a blessing, it also raises 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. In this regard, the transition from adolescence to adulthood is 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 interact with their disease management.
Our guests are sociologists at the Santesih research lab; 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 at theUM , announces the next Science Bar, which will be held at the Dôme on February 29 on the topic: “Palavas Underwater: Science Fiction or Reality?”
At "UM : Science," here's the lineup—let's get started!
Co-production: Divergence FM / University of Montpellier
Host: Lucie Lecherbonnier
Interview: Aline Périault / Lucie Lecherbonnier
Director: Alice Rollet
Listen to the show “A l’UM la science” on Divergence FM 93.9
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