“This Disease Is a Verdict You Must Live With for the Rest of Your Life”: Experiences and Perspectives From People Living With Adult-Onset Myotonic Dystrophy Type 1

Kristin Allergodt, Bente Kristensen, Ulla Werlauff, Pia Dreyer, Marit Kirkevold, Charlotte Handberg, Research and Development, National Rehabilitation Center for Neuromuscular Diseases, Department of Public Health, Faculty of Health, Aarhus University, Research and Development, Department of Intensive Care, Aarhus University Hospital, Faculty of Health Sciences, Oslo Metropolitan University

Qualitative Health Research

Published online on July 10, 2025

Abstract

Qualitative Health Research, Ahead of Print.
Myotonic dystrophy type 1 (DM1) is a progressive, multisystemic neuromuscular disease. DM1 has a biopsychosocial impact, causing physical and cognitive impairment and limitations in activity and participation as well as having social consequences. The aim ...