Myotonic dystrophy type 1 as a major risk factor for severe COVID-19?
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Updated: Dec 6, 2025

Modeling Myotonic Dystrophy 1 in C2C12 Myoblast Cells
Published on: July 29, 2016
Sebastiaan Dhont1, Rutger Callens2, Dieter Stevens3
1Department of Internal Medicine and Paediatrics, Ghent University Hospital, Corneel Heymanslaan 10, 9000, Ghent, Belgium. sebastiaan.dhont@ugent.be.
Insights
Patients with myotonic dystrophy type 1 (DM1) face severe outcomes from COVID-19. This case series highlights their high risk and poor prognosis, emphasizing the need for further research.
Area of Science:
- Neurology
- Infectious Diseases
- Pulmonology
Background:
- The COVID-19 pandemic poses significant challenges to global healthcare systems.
- Individuals with myotonic dystrophy type 1 (DM1), also known as Steinert's disease, are considered a high-risk group during infectious disease outbreaks.
- Limited data exists regarding the specific impact of COVID-19 on patients with DM1.
Purpose of the Study:
- To investigate the clinical course and outcomes of hospitalized patients with myotonic dystrophy type 1 (DM1) who contracted COVID-19.
- To assess the severity and prognosis of COVID-19 in this vulnerable patient population.
Main Methods:
- A case series was conducted involving three hospitalized patients with myotonic dystrophy type 1 (DM1) between April 1-30, 2020.
- Patients had advanced DM1, with two requiring nocturnal ventilatory support and two having limited respiratory capacity.
- Clinical data, including comorbidities and treatments received, were analyzed.
Main Results:
- All three patients with DM1 admitted for COVID-19 experienced severe disease.
- Despite maximal supportive care, including oxygen therapy, respiratory physiotherapy, and non-invasive ventilation, all three patients died from COVID-19.
- Comorbidities included obesity in two patients; diabetes mellitus was absent.
Conclusions:
- This case series confirms that patients with myotonic dystrophy type 1 (DM1) are at high risk for severe COVID-19 and poor outcomes.
- Further clinical trials are essential to establish optimal management strategies and identify outcome determinants for DM1 patients with COVID-19.
Abstract:
The coronavirus disease 2019 (COVID-19) pandemic is challenging health care systems worldwide. People with myotonic dystrophy type 1 (DM1) represent a high-risk population during infectious disease outbreaks, little is known about the potential impact of COVID-19 on patients with DM1. We studied the clinical course of COVID-19 in three hospitalized patients with myotonic dystrophy type 1 or Steinert's disease, between April 1, 2020-April 30-2020. All three had advanced Steinert's disease receiving non-invasive nocturnal home ventilatory support. Two of them lived in a residential care centre. Two patients had a limited respiratory capacity, whereas one patient had a rather preserved functional capacity but more comorbidities. Two out of three patients were obese, none of them had diabetes mellitus. Two patients received hydroxychloroquine. Despite maximal supportive care with oxygen therapy, antibiotics, intensive respiratory physiotherapy and non-invasive positive pressure ventilation, all three patients eventually died due to COVID-19. Our case series of three patients with DM1 admitted for COVID-19 confirms that they are at high risk for severe disease and poor outcome. Clinical trials are needed to define best practices and determinants of outcomes in this unique population.
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