Cardiomyopathy can have many different names and causes. At the Genetic CardioMYopathy Awareness Consortium, our focus is on cardiomyopathy that is inherited, or passed from one family member to the other. There are 55-75 genes that are known to cause genetic-based cardiomyopathy.
Close to half of all cardiomyopathy cases have some type of genetic basis or are inherited but only a very small percentage of diagnosed cardiomyopathy patients are ever asked to get genetically tested by their cardiologists even though their governing organizations recommend genetic testing. If you are interested in exploring genetic testing go to Support For Your Journey.
To learn more about cardiomyopathy and the different types of cardiomyopathies (all can have a genetic basis) take a look at the information below.
Cardiomyopathy Overview
Cardiomyopathy is a primary disease of the heart muscle that is not caused by heart valve disease or other conditions that increase pressure on the heart. It can occur at any age and can be passed down genetically.
Cardiomyopathy is a relatively common, yet little-known group of diseases of the heart muscle that tend to progress over time and affect the heart’s ability to pump blood through the body and/or cause irregularity of the heart rhythm. Inherited cardiomyopathy is the most common form of genetic heart disease, and is a predominant cause of sudden cardiac death in individuals under the age of 35.
Prevalence varies based on type, but overall, cardiomyopathy affects around 1 in every 250 people worldwide. All forms of cardiomyopathy have a few things in common:
- Some kind of change or abnormality to your heart muscle that makes it harder for your heart to pump blood to the rest of your body
- Similar symptoms (see below)
- Can lead to heart failure and/or sudden cardiac death if untreated
- Can be difficult to diagnose – ECG and medical history
Often underdiagnosed, misdiagnosed, or diagnosed too late, the consequences of cardiomyopathy can be very serious. Cardiomyopathy can interfere with day-to-day life and, in severe cases, can lead to heart failure and sudden cardiac death.
Common Symptoms of Heart Failure
Signs and symptoms of cardiomyopathy can vary widely. In its earliest stages, cardiomyopathy may not have symptoms and some individuals may not notice symptoms that are mild.
For others, symptoms interfere with day-to-day life and worsen over time, and can include irregular or rapid heartbeat (palpitations or arrhythmia), fatigue, feeling out of breath or having trouble breathing, dizziness or fainting, heaviness in the chest or chest pain, bloating of the stomach area, swelling of the legs, ankles, and feet.
Shortness of breath
Swelling of the ankles, feet, legs, and stomach
Heart palpitations
(fluttering of the heart)
Fatigue
Chest pain, discomfort, or pressure
Light-headedness and fainting
If you are experiencing any of the symptoms listed above, please contact your doctor and seek medical attention.
Are You Outside the United States?
If you’re located outside of the United States, please visit the Global Heart Hub website for information about genetic testing and resources.
Visit Global Heart Hub Website