Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body.

ABSTRACT:

Introduction

Experiences of illness change the physical body and embodiments, or the ways in which the world and the self are known through the body. When illness is anticipated, such as with inherited cancer predisposition syndromes, risk becomes embodied and shared in family groups. Embodied risk is experienced whether or not symptoms have manifested. To examine how individuals and families with genetic risk experience the world and understand their disease through their bodies, we employ Li-Fraumeni syndrome (LFS) as an exemplar. LFS is a rare, genetic, cancer predisposition syndrome with nearly 100% lifetime cancer risk starting from birth, limited opportunities for prevention, rigorous screening protocols, and early mortality.

Methods

Forty-five families, including 117

SUBMITTER: Werner-Lin A 

PROVIDER: S-EPMC9237847 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature