Living with Coronary sinus atrial septal defect
A rare heart condition present from birth with an opening between the two upper heart chambers.
Understanding Coronary sinus atrial septal defect
It can be found during pregnancy, at birth, or in infancy. Symptoms may include tiredness, shortness of breath with activity, a heart murmur, and palpitations.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tiredness (fatigue)
- Shortness of breath with exertion
- Trouble exercising
- Heart murmur
- Palpitations
- Blood flowing from left to right in the heart (shunt)
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 and Conquering CHD 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, Conquering CHD
- 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 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 this condition. It doesn't name a gene.
Also known as: asd coronary sinus; asd, coronary sinus type; atrial septal defect coronary sinus; atrial septal defect, coronary sinus type; coronary sinus atrial septal defects; unroofed coronary sinus
Patient organizations
- Adult Congenital Heart AssociationCoronary sinus atrial septal defect · United States
- Conquering CHDCoronary sinus atrial septal defect · United States
You are more than your diagnosis
Perspectives from people navigating life with Coronary sinus atrial septal defect.
Explore research for Coronary sinus atrial septal defect
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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