Living with Congenital pulmonary veins atresia or stenosis
A condition in which the veins that carry blood from the lungs back to the heart are narrowed or blocked.
Understanding Congenital pulmonary veins atresia or stenosis
It can affect one vein but often affects several. Stenosis means the vein walls thicken and narrow. The condition is progressive, so a vein can become fully blocked over time. Most often all the pulmonary veins of one lung are affected, which can cause high blood pressure in the lungs (pulmonary hypertension). GARD lists onset in childhood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions high blood pressure in the lungs (pulmonary hypertension).
- High blood pressure in the lungs (pulmonary hypertension)
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 and lung and breathing 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); Lung and breathing specialists (pulmonologists)
- 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 doesn't describe a cause for this condition yet.
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 Congenital pulmonary veins atresia or stenosis.
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