Living with Paroxysmal familial ventricular fibrillation
A rare inherited heart rhythm condition with episodes of dangerously fast, chaotic heartbeats in an otherwise healthy heart.
Understanding Paroxysmal familial ventricular fibrillation
People have ventricular fibrillation, which is a fast, disorganized heart rhythm, even though the heart's structure and function are normal. J waves on the heart tracing are linked to a higher chance of events at night and of repeat events. It can start at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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
Changes in the genes (also called variants) cause this condition. It is autosomal dominant, which means one changed copy of the gene is enough to cause it. GARD doesn't list a specific gene.
Also known as: familial paroxysmal ventricular fibrillation, non brugada type; idiopathic ventricular fibrillation; idiopathic ventricular fibrillation, non brugada type; ivf; paroxysmal familial ventricular fibrillation (disorder); paroxysmal ventricular fibrillation
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 Paroxysmal familial ventricular fibrillation.
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