Lingering Identity as Chronically Ill and the Unanticipated Effects of Life-Changing Precision Medicine in Cystic Fibrosis: A Case Report.
Sigrid L LadoresMorgan PolenPublished in: Journal of patient experience (2021)
Cystic fibrosis (CF) is the leading genetic disease among Caucasians; however, advances in diagnosis and treatment have improved both quality and quantity of life for those affected. A remarkable recent discovery is the triple-drug combination, elexacaftor/tezacaftor/ivacaftor, which has been touted as a "miracle drug" for CF because of its demonstrated efficacy and safety. This case study reports on an adult woman with CF who experienced positive life-changing results from elexacaftor/tezacaftor/ivacaftor, and yet discovered that she lived in fear that its effectiveness would diminish, and her debilitating symptoms would return. Her lingering identity as chronically ill tainted her view of her new life with skepticism and pervasive anxiety. This case highlights a critical need to engage in early, regular and sensitive discussions with patients before initiating treatments that may affect their emotional and mental health and provide referrals or services to meet those emergent needs.
Keyphrases
- cystic fibrosis
- pseudomonas aeruginosa
- mental health
- lung function
- healthcare
- randomized controlled trial
- end stage renal disease
- newly diagnosed
- systematic review
- primary care
- ejection fraction
- small molecule
- chronic kidney disease
- emergency department
- depressive symptoms
- high throughput
- sleep quality
- mental illness
- health insurance
- chronic obstructive pulmonary disease