1 in 30, and you may not know it: having a child with cystic fibrosis
Listening to the experience of those who live with cystic fibrosis every day. The 22nd FFC Research Spring Seminar in Jesolo provided an opportunity to collect video testimonies from parents who face this genetic condition on a daily basis.
It is important to listen to the experiences of those who have a son or daughter living with the disease. For the “1 in 30 — and you don’t know it” campaign, developed in collaboration with the Fondazione per la Ricerca sulla Fibrosi Cistica, ZADiG produced a series of videos in which parents of children and adolescents with cystic fibrosis—one of the most common serious genetic diseases, still without a definitive cure—share first-hand accounts of the impact the condition has had on their lives.
The aim of this video series is twofold: to raise public awareness about the importance of research and support for cystic fibrosis, and to promote knowledge of the cystic fibrosis carrier test. This genetic test detects mutations in the CFTR gene, which is responsible for the disease and may be passed on to children. Although healthy carriers do not show symptoms of the disease, two carriers may have a child affected by cystic fibrosis. In Italy, one person in 30 is a healthy carrier of cystic fibrosis—and usually does not know it.
Collected with care and sensitivity, these testimonies offer an authentic and moving insight into the daily challenges, hopes, and difficulties faced by those who live with this genetic condition every day. Through these stories, it is possible to gain a deeper understanding of the impact of cystic fibrosis on family life, the importance of research and support for those affected, and the need for greater awareness of the carrier screening test.
To learn more: www.testfibrosicistica.it
Videomaker: Sergio Menescardi
Camera operator: Mattia Cappelletti


