Living with Arrhythmogenic right ventricular cardiomyopathy
A heart muscle disease that usually appears in adulthood and can cause abnormal heartbeats.
Understanding Arrhythmogenic right ventricular cardiomyopathy
It usually appears in the teen years or adulthood. The breakdown of heart muscle (myocardium) raises the chance of an abnormal heartbeat (arrhythmia). It may cause no symptoms early on. Over time it can cause shortness of breath and swelling in the legs or belly, and later heart failure.
Signs & symptoms
GARD describes these symptoms when they occur:
- Fluttering or pounding in the chest (palpitations)
- Light-headedness
- Fainting (syncope)
- Shortness of breath
- Swelling in the legs or belly
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists and heart and blood vessel specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
SADS Foundation, LMNA Cardiac Diseases Network and Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: SADS Foundation, LMNA Cardiac Diseases Network, Children's Cardiomyopathy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with SADS Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. It can be inherited in a dominant way (one changed copy of the gene) or a recessive way (a changed copy from each parent).
Also known as: arrhythmogenic cardiomyopathy; arrhythmogenic right ventricular dysplasia; arrhythmogenic right ventricular dysplasia/cardiomyopathy; arrhythmogenic rvd; arvc; arvc cardiomyopathy
Patient organizations
- SADS FoundationArrhythmogenic right ventricular cardiomyopathy · United States
- LMNA Cardiac Diseases NetworkArrhythmogenic right ventricular cardiomyopathy · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Arrhythmogenic right ventricular cardiomyopathy.
Explore research for Arrhythmogenic right ventricular cardiomyopathy
Explore actively recruiting Arrhythmogenic right ventricular cardiomyopathy studies with HealthSpark.
Find actively recruiting studies for Arrhythmogenic right ventricular cardiomyopathy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Arrhythmogenic right ventricular cardiomyopathy studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Arrhythmogenic right ventricular cardiomyopathy
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Arrhythmogenic right ventricular cardiomyopathy experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.