Heart, or “cardiac” issues, can pose a serious health risk for people living with myotonic dystrophy (DM) because the heart is itself a muscle. People living with myotonic dystrophy type 1 (DM1) or type 2 (DM2) can experience cardiac issues. In general, individuals with DM1 are at a higher risk of cardiac problems and at a younger age than individuals with DM2, but heart problems can show up in different ways for each person.
Note: For more information on heart health, specialized tests, treatment, and supporting your heart health, read MDF’s DM and the Heart: A Community Guide
Although the symptoms outlined below may sound alarming, regular monitoring (even if you are not experiencing symptoms now) and preventive care can greatly reduce the risk of serious complications and help you feel more confident in your heart health. Cardiovascular symptoms in DM often include:
- Arrhythmias: This is an irregular heartbeat that may include skipped beats, a racing heart, or longer pauses between heartbeats. You might notice your heart fluttering or experience dizziness or fainting.
- Conduction Defects: The heart’s electrical signals can slow down or become blocked, causing a slow heart rate (bradycardia) or other more serious blockages. In severe cases, this can lead to the need for a pacemaker (Chakraborty et al., 2016; Wahbi et al., 2016).
- Cardiomyopathy: This is when the heart muscle becomes weaker, potentially leading to heart failure. You may feel unusually tired, short of breath, or notice swelling in your legs due to fluid buildup (Rimoldi et al., 2024). While cardiomyopathy can progress over time, early management can make a big difference.
It is recommended to have a cardiac evaluation as soon as an individual is diagnosed with myotonic dystrophy. In some cases, this evaluation may be with your primary care physician. Often, individuals will be referred to a cardiologist, who will perform specialized tests early after diagnosis. They will assess your medical history and symptoms, provide an examination, and perform simple tests such as an electrocardiogram (ECG).
If your test results are normal, you may be monitored regularly. Typically, the doctor will see you annually to assess your heart health. If your test results are abnormal, doctors may recommend further treatment.
For more information on heart health, specialized tests, treatment, and supporting your heart health, read MDF’s DM and the Heart: A Community Guide.
