A l'UM la science [S03-ep17] : Educational and professional paths 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 last-minute guest is Agnès Pesenti, in charge of scientific culture at the UM, who presents the next bar des sciences. A program co-produced with Divergence FM and broadcast every Wednesday at 6pm on 93.9.

More than 6,800 people in France are living with cystic fibrosis. This potentially serious genetic disease affects respiratory, digestive and, possibly, reproductive functions, and can lead to disabling symptoms such as cough evolving into respiratory failure, high susceptibility to bacterial infections, transit 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 greatly improved, thanks in particular to systematic neonatal screening and the creation of 49 cystic fibrosis resource and competence centers. The life expectancy of a child born today with this disease is between 40 and 50 years, and should improve further in the years to come.

While this progress is obviously an opportunity, it also raises new issues for sufferers, with the possibility of planning for the future, schooling, a professional career and family life. This raises the question of access to social participation and its compatibility with symptom management. The end of adolescence and the transition to adulthood are particularly destabilizing times for young people with cystic fibrosis, when perceptions of the environment and obstacles to social participation can interact strongly with disease management.

Our guests are sociologists at the Santesih laboratory, and have published a book entitled L'ombre du handicap (The Shadow of Disability), following an 18-month survey of teenagers and young adults with cystic fibrosis to better understand the obstacles or facilitators to social participation encountered at school or in the workplace.

At the end of the program, Agnès Pesenti, head of scientific culture at the UM, presents the next science bar, to be held at the Dôme on February 29, on the theme: "Palavas under the waves, science fiction or reality?"

At UM la science you've got the program, here we go!

Coproduction: Divergence FM / Université de Montpellier
Animation: Lucie Lecherbonnier
Interviews: Aline Périault / Lucie Lecherbonnier
Production : Alice Rollet

Listen to the program "A l'UM la science" on Divergence FM 93.9