Science at UM [S03-ep17]: Educational pathways and professionalization with cystic fibrosis
This week on A l’UM la science, Laura Silvestri and Sylvain Ferez from the Santesih laboratory present their book L’ombre du handicap (The Shadow of Disability). Our last-minute guest is Agnès Pesenti, head of scientific culture at UM, who presents 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 coughing leading 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 was no more than 5 years.
Since the 2000s, patient care has improved significantly, thanks in particular to systematic neonatal screening and the creation 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 improve further in the coming years.
While these advances are obviously a blessing, they also raise new issues for patients with the possibility of planning for the future, education, a professional career, and family life. This raises the question of access to social participation and its compatibility with symptom management. The transition from adolescence to adulthood is therefore a particularly unsettling time for young people with cystic fibrosis, a time when their perception of their environment and the obstacles to social participation can have a significant impact on the management of their disease.
Our guests are sociologists at the Santesih laboratory. They have published a book entitled L’ombre du handicap (The Shadow of Disability), following an 18-month study of adolescents and young adults with cystic fibrosis to better understand the barriers and facilitators to social participation encountered at school or in the workplace.
At the end of the program, Agnès Pesenti, head of scientific culture at UM, presents the next science bar, which will be held at Le Dôme on February 29 on the theme: "Palavas under the waves: 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
Listen to the program “A l’UM la science” on Divergence FM 93.9
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