Related Experiment Video
Updated: May 20, 2026

In Vivo Electrophysiological Measurement of Compound Muscle Action Potential from the Forelimbs in Mouse Models of Motor Neuron Degeneration
Published on: June 15, 2018
Congenital myopathies in adult patients: lived experiences and coping mechanisms
Lizan Stinissen1, Erin Peet1, Sanne A J H van de Camp1
1Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Centre, Nijmegen, The Netherlands.
Purpose:
To study the impact of congenital myopathies in adult patients' lives and their coping mechanisms to live a fulfilling life, in an era with no treatments on the horizon.
Methods:
We conducted a qualitative study with semi-structured interviews among Dutch adult patients with congenital myopathies, exploring their experiences of living with the condition. Data from the interviews were analysed through open coding and thematic analysis using Atlas.ti version 24.0.0.
Results:
Sixteen adult patients (50% females; age range of 26-72 years) were interviewed during January-April 2024. Six main themes were identified: disease management, self-management, personal development, social participation, support, and illness acceptance. Coping strategies were related to aspects of the disease, personal traits of patients and their social environment.
Conclusion:
This study provided a comprehensive perspective going beyond physical functioning, that also considered personal, social, and environmental factors that are crucial for coping with the disease and understanding its impact. These experiences offer valuable insights for clinicians, patients and family members, helping to support patients in finding fulfilment in life.
Related Concept Videos
Disorders of the Skeletal Muscle
Musculoskeletal disorders
Musculoskeletal disorders involve injuries and conditions affecting the skeletal muscles and associated connective tissues. These disorders can arise from acute biomechanical stresses or chronic overuse and can occur across different age groups. Common injuries include sprains, fractures, and muscular strains, often resulting from...
Myasthenia Gravis: Overview and Treatment
These antibodies interfere with the function of the nicotinic receptors in three ways: by binding to the receptor and disrupting acetylcholine binding; by causing cross-linking of receptors which leads...
Myasthenia Gravis ll: Pathophysiology
Alterations in Muscle Tone lll
Alterations in Muscle Tone ll
Cardiomyopathy V: Interprofessional Care
