Living with Familial bicuspid aortic valve
A heart condition in which the aortic valve has two flaps instead of three, running in families.
Understanding Familial bicuspid aortic valve
It is present from birth. It often causes no symptoms, but can lead to valve problems over time, such as leaking or narrowing. It can also come with widening of the aorta (the large blood vessel from the heart).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Aortic valve with two flaps (bicuspid)
- Heart murmur
- Leaking aortic valve (aortic regurgitation)
- Narrowed aortic valve (aortic stenosis)
- Widening of the aorta (aneurysm)
- High blood pressure
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
Adult Congenital Heart Association 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: Adult Congenital Heart Association
- 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 Adult Congenital Heart Association
- 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 genes cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it. GARD does not name the gene.
Also known as: familial bav; familial bav (bicuspid aortic valve)
Patient organizations
- Adult Congenital Heart AssociationFamilial bicuspid aortic valve · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial bicuspid aortic valve.
Explore research for Familial bicuspid aortic valve
Explore actively recruiting Familial bicuspid aortic valve studies with HealthSpark.
Find actively recruiting studies for Familial bicuspid aortic valve 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 Familial bicuspid aortic valve 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 Familial bicuspid aortic valve
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 Familial bicuspid aortic valve 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.