The experience of growing up with cystic fibrosis

Abstract

Eleven persons with cystic fibrosis (CF) were interviewed about their experience of growing up with the disease. The testimonies were analyzed in three steps: description, reduction, and interpretation. The description pointed out the difficulty in performing the treatment in accordance to work and study demands. The reduction stressed that the shock with the diagnosis and the difficulty to disclose the disease are a central phenomena of the patients’ experience. Critical analysis led us to interpret that growing up with CF is a unique experience, reflected in multiple acceptance and adaptation strategies to the disease. Late diagnosis, family support, disease disclosure and the search for a job represent transversal issues in the patients’ experience. Public health policies should be the cornerstone of strategies promoting health and quality of life designed to meet the true needs of both patients and families.