What it is
Arrhythmogenic right ventricular cardiomyopathy is a condition in which heart muscle, often in the right ventricle, may gradually be replaced by scar or fatty tissue. This can make the heart's electrical signals less stable and may lead to irregular heart rhythms. It can also involve the left side of the heart in some people.
ARVC is often inherited, and it runs in some families. Changes in certain genes, including those that help heart cells stay connected, have been linked to it. Having a gene change does not mean a person will definitely develop the condition, and people in the same family can be affected very differently.
Some people notice palpitations, lightheadedness or fainting, while others have no symptoms for a long time. Because the picture varies so much, it is usually recognized through a combination of personal and family history, heart testing and imaging, evaluated by a qualified clinician rather than from any single result.
In some families, genetic heart testing is part of the conversation. Genetic tests show risk or carrier status. They do not diagnose heart disease on their own.
How it’s traditionally been approached
Traditionally, evaluation has involved a detailed personal and family history, a physical exam, an electrocardiogram (ECG), rhythm monitoring, and imaging such as an echocardiogram or cardiac MRI. Clinicians weigh these findings together, since no one test tells the whole story.
Care has often focused on monitoring the heart over time, talking about activity levels, and addressing rhythm concerns. Approaches may include medicines, procedures or implanted devices in some situations. Whether any of these is appropriate is a decision for a licensed clinician after an evaluation.
Genetic testing has been used in many families, usually alongside genetic counseling. When a disease-causing variant is found, cascade (family) testing may be offered to relatives so they can understand their own risk. A negative result does not rule out risk, and a variant of uncertain significance is not a diagnosis.
How the right cardiologist may help
A cardiologist who focuses on inherited cardiomyopathy, sometimes working with an electrophysiologist or genetic counselor, may help bring the pieces together. A first visit generally involves reviewing your symptoms, your health history and your family's history, including any early or unexplained heart problems or sudden deaths in relatives.
The visit may include a physical exam and a discussion of which tests, if any, make sense for you. A provider may explain what ECG, monitoring, imaging or bloodwork can and cannot show, and whether genetic testing could be useful in your situation. Genetic counseling before and after testing is generally recommended.
Questions you might ask include: What do my results mean for me and for my relatives? Should family members be screened? How might genetic test results affect insurance? GINA protects against genetic discrimination in US health insurance and employment, but not life, disability or long-term-care insurance, so ask about those before testing. Also ask what your insurer is likely to cover, since coverage varies by insurer, state and diagnosis.
The whole-person view
Body, mind and stress affect each other. Learning that a heart condition may run in your family can bring worry, guilt or fear, and stress can in turn make palpitations or physical sensations feel more intense. Taking both your heart and your emotional well-being seriously is part of caring for the whole person.
Some people find body-based support, such as the approaches offered through Somatic Experiences, helpful for feeling more settled in their bodies. Others value talk therapy through Therapists.plus to work through health anxiety or family concerns. These can complement, never replace, the guidance of 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
- This page is educational only and is not medical advice, a diagnosis or a treatment plan; licensed professionals should guide your care.
- Genetic tests show risk or carrier status and must be interpreted with your history, exam, imaging and bloodwork by a qualified cardiologist, electrophysiologist or genetic counselor.
- Medicines, devices and procedures are regulated products or treatments, and only a licensed clinician can decide what is appropriate for you; ask your provider about their regulatory status.
- For an emergency such as fainting, chest pain or a racing heartbeat with trouble breathing, call 911; in an emotional crisis, call or text 988.
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Frequently asked questions
What is arrhythmogenic right ventricular cardiomyopathy?
Arrhythmogenic right ventricular cardiomyopathy is an inherited heart muscle condition in which healthy tissue, often in the right ventricle, may be replaced by scar or fatty tissue. It can affect the heart's electrical stability and rhythm. Its effects vary widely from person to person.
Is arrhythmogenic right ventricular cardiomyopathy genetic?
It is often inherited and can run in families, and certain gene changes have been linked to it. However, having a gene change does not guarantee someone will develop the condition. A cardiologist or genetic counselor can help explain what it may mean for you.
What are the symptoms of arrhythmogenic right ventricular cardiomyopathy?
Some people notice palpitations, lightheadedness or fainting, while others have no symptoms. Symptoms alone cannot confirm the condition. Anyone with fainting or concerning symptoms should seek medical care promptly, and should call 911 in an emergency.
How is arrhythmogenic right ventricular cardiomyopathy evaluated?
It is usually evaluated by combining personal and family history, a physical exam, ECG, rhythm monitoring and imaging such as echocardiogram or cardiac MRI. Genetic testing may be added in some cases. A qualified clinician weighs these findings together.
Can genetic heart testing diagnose ARVC?
No, genetic heart testing cannot diagnose ARVC on its own. It shows risk or carrier status and must be read alongside history, exam, imaging and bloodwork. A negative result does not rule out risk, and a variant of uncertain significance is not a diagnosis.
Should family members be tested if ARVC is found?
If a disease-causing variant is found, cascade (family) testing may be offered to relatives, and relatives may also be offered heart screening. A genetic counselor or cardiologist can explain who might benefit. Ask about insurance first, since GINA does not cover life, disability or long-term-care insurance.
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.