Living with Pulmonic stenosis
A rare heart condition in which the path from the right side of the heart to the lungs is narrowed.
Understanding Pulmonic stenosis
The narrowing can be at, above, or below the pulmonary valve. This makes it harder for the heart to pump blood to the lungs. Symptoms and severity vary from person to person.
Signs & symptoms
Symptoms vary from person to person. GARD says they may include:
- Blue or purple lips, skin, and nails (cyanosis)
- Tiredness
- A heart murmur
- Chest pain
- Shortness of breath
- Fainting
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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
- A doctor familiar with rare conditions, plus specialists as needed
- 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
GARD lists autosomal recessive inheritance, meaning a child inherits a changed copy of the gene from each parent. It doesn't name a gene here.
Also known as: narrowing of pulmonic valve; pulmonary stenosis; pulmonary valve stenosis; pulmonic stenosis (disease); pulmonic valve stenosis
Patient organizations
- Adult Congenital Heart AssociationPulmonic stenosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Pulmonic stenosis.
Explore research for Pulmonic stenosis
Explore actively recruiting Pulmonic stenosis studies with HealthSpark.
Find actively recruiting studies for Pulmonic stenosis 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 Pulmonic stenosis 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 Pulmonic stenosis
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 Pulmonic stenosis 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.