The Struggle to Breathe: Living at Life Expectancy with Cystic Fibrosis

The first sizeable cohort of people living with cystic fibrosis(CF) has now reached adulthood. Gradual improvements in thediagnosis and treatment of the disease have increased life expectancyto approximately 32 years. Members of this cohort have livedall their lives near, at, or slightly beyond life expectancy.The authors tell the story of Lori Morris-Hughes, a 36-yearold who balances the demands of work and family life with life-longterminal illness. Whereas many accounts of medical advancementwrite the lived experiences of the ill out of history, Morris-Hughes'sillness narrative provides an account of the ways in which thetemporal and social conditions of existence are problematicfor those who live during times of increased life expectancy.Oral history is a particularly appropriate method of researchin the field of illness narrative.