Living with Heritable pulmonary arterial hypertension
An inherited form of high blood pressure in the lung arteries that strains the right side of the heart.
Understanding Heritable pulmonary arterial hypertension
It involves raised resistance in the arteries of the lungs, which leads to right heart failure. It is progressive. It can start at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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 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 may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Pulmonary Hypertension 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
GARD says it occurs because of changes in genes that make PAH more likely, or in a family setting. It can be autosomal dominant or autosomal recessive.
Also known as: familial primary pulmonary hypertension; familial pulmonary arterial hypertension; fpah; hereditary pulmonary arterial hypertension; hpah
Patient organizations
- Pulmonary Hypertension AssociationHeritable pulmonary arterial hypertension · United States
- Phaware Global AssociationHeritable pulmonary arterial hypertension · United States
You are more than your diagnosis
Perspectives from people navigating life with Heritable pulmonary arterial hypertension.
Explore research for Heritable pulmonary arterial hypertension
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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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