The challenges faced by patients with hereditary myopathy during the COVID-19 pandemic.

BACKGROUND: Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 1:2000.

METHODS: This cross-sectional research was conducted with a qualitative research model. Data were collected from patients with an online survey using the snowball sampling method. The study was conducted in accordance with the STROBE checklist methodology. Frequencies and percentages were used to analyse demographic data, and content analysis was used for qualitative opinions.

RESULTS: Most of the participants were men and their education levels were low. Participants reported experiencing physical and socio-economic barriers to accessing healthcare. Participants also stated that these barriers have worsened since COVID-19.

CONCLUSIONS: Patients with hereditary myopathy are stigmatised by society and face different problems depending on the type of disease and level of function. It is recommended that decision-makers enable patients with hereditary myopathy in exceptional situations to access healthcare services and take steps to resolve their problems.