Journal Article

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

J. Daniel Schubert and Margaret Murphy

in The Oral History Review

Published on behalf of Oral History Association

Volume 32, issue 1, pages 35-55
Published in print January 2005 | ISSN: 0094-0798
Published online January 2005 | e-ISSN: 1533-8592 | DOI:
The Struggle to Breathe: Living at Life Expectancy with Cystic Fibrosis

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The first sizeable cohort of people living with cystic fibrosis (CF) has now reached adulthood. Gradual improvements in the diagnosis and treatment of the disease have increased life expectancy to approximately 32 years. Members of this cohort have lived all their lives near, at, or slightly beyond life expectancy. The authors tell the story of Lori Morris-Hughes, a 36-year old who balances the demands of work and family life with life-long terminal illness. Whereas many accounts of medical advancement write the lived experiences of the ill out of history, Morris-Hughes's illness narrative provides an account of the ways in which the temporal and social conditions of existence are problematic for those who live during times of increased life expectancy. Oral history is a particularly appropriate method of research in the field of illness narrative.

Journal Article.  0 words. 

Subjects: Oral History

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