Journal article

Living with Hereditary Haemorrhagic Telangiectasia: stigma, coping with unpredictable symptoms, and self-advocacy

Adrienne Sexton, Bridget Gargan, Jessica Taylor, Michael Bogwitz, Ingrid Winship

Psychology and Health | TAYLOR & FRANCIS LTD | Published : 2019

Abstract

OBJECTIVE: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. DESIGN: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s-60s. MAIN OUTCOME MEASURES: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. RESULTS: Narratives hig..

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