Living with Familial isolated arrhythmogenic right ventricular dysplasia
An inherited heart muscle condition that affects the right lower chamber and can cause irregular heartbeats.
Understanding Familial isolated arrhythmogenic right ventricular dysplasia
In ARVC, heart muscle in the right lower chamber is replaced by fat and scar-like tissue. This can cause dangerous irregular heartbeats (ventricular arrhythmias). It may cause palpitations, a fast heartbeat (ventricular tachycardia), or fainting (syncope).
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary says it may cause:
- Palpitations
- Fast heartbeat from the lower chambers
- Fainting (syncope)
- Irregular heartbeats (arrhythmias)
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 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, 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 cause it, but doesn't name a gene. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: familial isolated arrhythmogenic right ventricular cardiomyopathy; familial isolated arrhythmogenic ventricular cardiomyopathy; familial isolated arrhythmogenic ventricular dysplasia; familial isolated arvc; familial isolated arvd; familial isolated arvd (arrhythmogenic right ventricular dysplasia)
Patient organizations
- SADS FoundationFamilial isolated arrhythmogenic right ventricular dysplasia · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial isolated arrhythmogenic right ventricular dysplasia.
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