Living with Autoimmune pulmonary alveolar proteinosis
A rare autoimmune lung disease in which a fatty-protein material builds up in the lung's air sacs, making breathing harder.
Understanding Autoimmune pulmonary alveolar proteinosis
It is the most common form (90 percent of cases) of pulmonary alveolar proteinosis. Some people have no symptoms, while others have progressive trouble breathing, especially with activity. It can begin from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Trouble breathing
- Shortness of breath with activity
- Dry, long-lasting cough
- Tiredness and weight loss
- Chest pain
- Low blood oxygen, with blue-tinged skin or clubbed fingertips in some
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
The PAP Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: The PAP Foundation
- 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 The PAP Foundation
- 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 antibodies (IgG) block a protein called GM-CSF that helps clear surfactant from the lungs. Surfactant then piles up in the air sacs.
Also known as: apap; autoimmune pap; idiopathic pap; idiopathic pulmonary alveolar proteinosis; ipap; pap acquired
Patient organizations
- The PAP FoundationAutoimmune pulmonary alveolar proteinosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Autoimmune pulmonary alveolar proteinosis.
Explore research for Autoimmune pulmonary alveolar proteinosis
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- Eligibility is confirmed by the study team
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