Living with Idiopathic pulmonary artery dilatation
A rare condition from before birth in which the main artery to the lungs is wider than normal.
Understanding Idiopathic pulmonary artery dilatation
It happens during embryo development and isn't caused by another heart, lung, or artery disease. Some people have symptoms and others have none. In severe cases, the windpipe (trachea) may narrow with changes in posture, leading to bluish skin and severe shortness of breath.
Signs & symptoms
Symptoms vary from person to person, and some people have none. GARD lists these:
- Shortness of breath
- Tiredness (fatigue)
- Cough
- Coughing up blood
- Heart palpitations
- Chest pain
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 says the condition happens during embryo development and isn't caused by other heart, lung, or artery disease. It doesn't list a gene.
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 Idiopathic pulmonary artery dilatation.
Explore research for Idiopathic pulmonary artery dilatation
Explore actively recruiting Idiopathic pulmonary artery dilatation studies with HealthSpark.
Find actively recruiting studies for Idiopathic pulmonary artery dilatation 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
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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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