Living with Eisenmenger syndrome
A condition in which an unrepaired heart defect leads to high blood pressure in the lungs and bluish skin.
Understanding Eisenmenger syndrome
It most often occurs in people born with a heart defect that was not repaired in childhood. The most common defect is a hole between the lower heart chambers (ventricular septal defect). Symptoms include bluish skin color, rounded fingertips and toes (clubbing), and shortness of breath, and usually get worse over time. It is not inherited in families.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shortness of breath with activity
- Tiredness
- Low blood oxygen level
- High blood pressure in the lungs
- Palpitations and irregular heartbeat
- 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 lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Pulmonary Hypertension Association and Adult Congenital Heart Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Pulmonary Hypertension Association, 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 Pulmonary Hypertension 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
It develops in people with a heart defect that was not repaired. GARD says it is not inherited in families.
Also known as: eisenmenger complex; eisenmenger's complex; eisenmenger's syndrome
Patient organizations
- Pulmonary Hypertension AssociationEisenmenger syndrome · United States
- Adult Congenital Heart AssociationEisenmenger syndrome · United States
- Phaware Global AssociationEisenmenger syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Eisenmenger syndrome.
Explore research for Eisenmenger syndrome
Explore actively recruiting Eisenmenger syndrome studies with HealthSpark.
Find actively recruiting studies for Eisenmenger syndrome 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 Eisenmenger syndrome 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 Eisenmenger syndrome
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 Eisenmenger syndrome 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.