A patient's experience of cystic fibrosis care

Abstract

Care for people with cystic fibrosis has changed dramatically over my lifetime. The introduction of Pulmyzone (dornase alfa) in the mid-1990s, when I was a teenager, saw my lung function improve so much that I was able to complete a 6-hour moonlight hike through Richmond park, in London, UK, when previously even the short walk to school had left me out of breath. Although that lung capacity was not maintainable, the treatment is no doubt part of the reason why I am still alive at the age of 38 years. This outcome is amazing, as when I was born, in 1981, my parents were told I was unlikely to make it out of my teenage years. The future of cystic fibrosis care: a global perspectiveThe past six decades have seen remarkable improvements in health outcomes for people with cystic fibrosis, which was once a fatal disease of infants and young children. However, although life expectancy for people with cystic fibrosis has increased substantially, the disease continues to limit survival and quality of life, and results in a large burden of care for people with cystic fibrosis and their families. Furthermore, epidemiological studies in the past two decades have shown that cystic fibrosis occurs and is more frequent than was previously thought in populations of non-European descent, and the disease is now recognised in many regions of the world. Full-Text PDF