Living with Familial idiopathic dilatation of the right atrium
A rare heart condition present from birth in which the heart's right upper chamber is very enlarged, often without symptoms.
Understanding Familial idiopathic dilatation of the right atrium
It usually causes no symptoms and is often found by chance on a heart ultrasound (echocardiogram) or chest X-ray. It can sometimes come with other problems, such as irregular heartbeats, a leaky tricuspid valve, or a blood clot in the atrium.
Signs & symptoms
Many people have no symptoms. GARD lists these among the features that can occur:
- Palpitations
- Fainting (syncope)
- Trouble breathing (dyspnea)
- Irregular heartbeat (arrhythmia)
- Atrial fibrillation (quivering upper chambers)
- Enlarged heart (cardiomegaly)
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.
Care & treatment
- Care team
- Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
The cause is not known. GARD says changes in genes cause it, but doesn't name a gene.
Also known as: familial idiopathic dilatation of right atrium; familial idiopathic dilatation of the right atrium (disease); familial idiopathic dilation of right atrium
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial idiopathic dilatation of the right atrium.
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