What it is
Dilated cardiomyopathy, often called DCM, is a condition in which the heart's main pumping chamber becomes enlarged and the muscle may not squeeze as strongly as expected. Many different things can lead to it, including infections, certain exposures, other medical conditions, and genetics.
When it is described as inherited, sometimes called familial dilated cardiomyopathy, it means a gene change may run in a family. Several different genes have been linked to it, and a family member may carry a change without having noticeable symptoms.
Genetic heart testing can look for these gene changes, but it shows risk or carrier status. It does not diagnose heart disease on its own. Results must be read alongside personal and family history, a physical exam, imaging and bloodwork by a qualified cardiologist, electrophysiologist or genetic counselor.
How it’s traditionally been approached
Traditionally, evaluation begins with a conversation about symptoms and a detailed family history, often drawn as a family tree. Clinicians commonly ask about heart failure, rhythm problems, sudden unexplained loss of a relative, or early heart disease in the family.
Tests such as an echocardiogram, an electrocardiogram, rhythm monitoring, cardiac MRI and bloodwork are commonly used to see how the heart looks and functions. Providers may also look for other causes before considering an inherited one.
When a disease-causing gene variant is found in one person, cascade testing, which means offering testing to blood relatives, has traditionally been discussed. Relatives who do not carry the variant and relatives who do may each be guided toward different follow-up, as decided by their clinicians.
How the right cardiologist may help
The right cardiologist, especially one focused on inherited cardiomyopathy or on heart failure and cardiomyopathy management, may help you make sense of your family history and decide whether genetic heart testing is worth discussing. A first visit generally includes questions about you and your relatives, a physical exam, and a conversation about which tests, if any, may be appropriate.
A genetic counselor can often be part of that team. Counseling before testing may help you understand what results could and could not tell you, and counseling afterward may help you interpret them. Counselor licensing varies by state, so it's fine to ask about credentials.
Questions you might bring: What could my family history mean? Would genetic testing be useful for me or my relatives? What does a negative or uncertain result mean? Should family members be screened? How might testing affect life, disability or long-term-care insurance? Also ask what your insurer may cover, since coverage varies by insurer, state and diagnosis.
The whole-person view
Body, mind and stress affect one another. Learning that a heart condition may run in your family can bring worry, guilt or uncertainty, and ongoing stress may in turn affect sleep, energy and how you feel day to day. Looking at the whole person, not only the heart, can be a helpful way to think about care.
Some people find body-based support, such as the approaches listed through Somatic Experiences, helpful for feeling more settled. Others value talk therapy through Therapists.plus to work through fear about family health. These are options to explore alongside, not instead of, guidance from your cardiology team.
Somatic Experiences: nervous system regulation →Somatic Experiences: embodiment and movement →Therapists.plus: anxiety panic and ocd →Therapists.plus: mind body connection →
Keep in mind
- Licensed professionals should guide all care decisions; this page does not diagnose or recommend any test or treatment.
- A genetic test shows risk or carrier status. A negative result does not rule out risk, and a variant of uncertain significance is not a diagnosis.
- GINA protects against genetic discrimination in US health insurance and employment, but it does not cover life, disability or long-term-care insurance, so ask about those before testing.
- For emergencies such as chest pain, fainting or severe shortness of breath, call 911; in an emotional crisis, call or text 988.
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Frequently asked questions
What is dilated cardiomyopathy inherited?
Dilated cardiomyopathy inherited means the condition may be linked to gene changes passed through a family. The heart's main pumping chamber enlarges and the muscle may not pump as strongly as expected. Not every case is genetic, so a cardiologist looks at the whole picture.
Can dilated cardiomyopathy run in families?
Yes, in some families it can. When more than one relative has cardiomyopathy or related heart problems, clinicians may consider an inherited cause. A cardiologist can review your family history and discuss whether further evaluation makes sense.
Should I get genetic heart testing for dilated cardiomyopathy?
Whether to pursue genetic heart testing is a decision to make with a cardiologist or genetic counselor. Testing shows risk or carrier status and does not diagnose disease alone. Counseling before and after testing is generally recommended.
What does a negative or uncertain genetic result mean?
A negative result does not rule out risk, because not every gene change is known or detectable. A variant of uncertain significance is not a diagnosis and is not proof of disease. A qualified professional can explain what your result means alongside your history and other tests.
Should my relatives be tested too?
If a disease-causing variant is found, cascade testing of blood relatives is commonly discussed. Even without a genetic finding, relatives may be offered heart screening. Your cardiologist or genetic counselor can advise which relatives to consider.
Will insurance cover testing, and can results affect my insurance?
Coverage varies by insurer, state and diagnosis, so confirm with your insurer and provider. GINA protects against genetic discrimination in US health insurance and employment, but not life, disability or long-term-care insurance. Ask about those before testing.
Educational resource. CardioGenes shares general information and connects people with independent cardiologists. It is not medical advice, diagnosis or treatment. Talk with a licensed professional about your health.