The experience of Colombian boys and young men living with Duchenne muscular dystrophy

Abstract Duchenne muscular dystrophy (DMD) is a chronic disease that primarily affects males and characterized by progressive physical impairment and, eventually, death. This qualitative study aimed to explore understand the experience of diagnosis in young people with DMD living Bogotá, Colombia. After securing approval from Research Ethics Committee (CEI-ABN026-000311), nine individuals took part semi-structured interview, their narratives were analyzed using thematic analysis. The main topics developed throughout were: negative representation disease; fear; difficulty expressing emotions; patient-doctor relationship; wheelchair; caregivers coping strategies. We conclude affected face several challenging experiences underscore need for better, more respectful, compassionate interactions healthcare providers. Also, are indicative socio-cultural context needs become responsive towards disability.