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Whether you’re newly diagnosed, supporting a loved one, or seeking deeper insight into Pulmonary Alveolar Proteinosis (PAP), you’ve come to the right place. The Education Hub is your starting point for trustworthy, up-to-date information from leading experts, real patients, and partner organizations. Get the facts, understand your options, and take the next step with confidence.

What Is Pulmonary Alveolar Proteinosis?

PAP is a rare lung disease in which surfactant, a naturally occurring substance meant to keep your lungs open, builds up abnormally in the air sacs (alveoli). This buildup prevents oxygen from passing into the bloodstream, making breathing increasingly difficult.

The most common form of PAP is autoimmune PAP (aPAP) which is caused by the presence of autoantibodies to granulocyte/macrophage colony stimulating factor (GM-CSF) which prevents cells in the lung (macrophages) from removing the excess surfactant. There are other types of PAP (secondary PAP, hereditary PAP, congenital PAP) that are linked to hematologic disorders, environmental exposures, or genetic factors.

Key Facts About PAP

7 in 1 million

people are affected by PAP worldwide.

30-50 years old

is the age when PAP is most commonly diagnosed.

~90% of cases

are Autoimmune Pulmonary Alveolar Proteinosis (aPAP).

PAP Symptoms

Common symptoms overlap with asthma, pneumonia, or COPD and some people show no symptoms in early stages.

  • Shortness of breath (dyspnea)

  • Chronic cough

  • Fatigue

  • Unexplained weight loss

  • Chest discomfort

Diagnosis

Imaging Tests

Chest X-rays and CT scans often reveal a “crazy-paving” pattern unique to PAP.

Bronchoalveolar Lavage (BAL)

This test helps confirm excess surfactant buildup.

Blood tests

Particularly important in detecting autoimmune PAP (GM-CSF antibodies).

Treatment

Treatment options vary by PAP type and patient need. Ongoing monitoring is essential.

Whole Lung Lavage (WLL)

The most common treatment for moderate/severe PAP – this can be used for aPAP and hereditary PAP.

GM-CSF Therapy

Targets the underlying macrophage dysfunction in PAP.

Treating the Root Cause

In secondary PAP, managing the primary illness or exposure is key.

 Living with PAP can feel isolating—but you're not alone. We’ve gathered practical tools and links to help you get the support you need, from insurance assistance to finding a clinical trial.

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