The Experience of Adolescents and Young Adults Living with Hereditary Angioedema

Introduction: Hereditary Angioedema (HAE) is a rare genetic disorder characterized by recurring episodes of submucosal and subcutaneous edema, posing significant physical, emotional, and psychological challenges to patients' well-being.Purpose: This study aims to explore the experiences of adolescents and young adults living with HAE through a qualitative inquiry.Methods: A descriptive qualitative study with a content analysis approach was undertaken in 2023. Semi-structured interviews were conducted with all nine adolescents and young adults diagnosed with HAE in the daily intravenous immunoglobulin clinic of a Turkish hospital. The MAXDA10 program was used to store and analyze data.Results: The participant’s average age was 21.11±5.51 years. A main theme, ‘navigating the journey of life with hereditary angioedema,’ was identified, along with two subthemes: ‘navigating the uphill journey of life with HAE’ (grasping physical-psychosocial issues, living under the shadow of fear and death, being chained to one’s city, being ever-ready and vigilant, striving to persuade the healthcare team, facing setbacks in education and career, and struggling to attain optimal growth and development) and ‘navigating the downhill journey of life with HAE’ (family backing, embracing the condition, and being empowered by knowing a rare disease).Conclusion: The experience of adolescents and young adults was found to be comparable to navigating a challenging journey through life, involving both uphill struggles and downhill moments. Their resilience should be recognized, and tailored support should be provided by healthcare professionals, along with advocacy for policies that nurture their growth and a brighter future.