Living with Aneurysm of sinus of Valsalva
A rare heart condition present from birth in which part of the aortic root bulges out, often causing no symptoms until it ruptures.
Understanding Aneurysm of sinus of Valsalva
When it hasn't ruptured, it usually causes no symptoms. When it ruptures, it can cause shortness of breath with activity, tiredness, and chest pain, and it can lead to congestive heart failure if not treated. GARD lists the onset as adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Widening (dilation) of the aortic sinus
- Leaking of the aortic valve (aortic regurgitation)
- Trouble breathing (dyspnea)
- Heart murmur
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 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
- 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
GARD describes it as a heart malformation present from birth. It doesn't describe a specific cause.
Also known as: sinus of valsalva aneurysm
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 Aneurysm of sinus of Valsalva.
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