Living with Idiopathic Pulmonary Fibrosis
A long-term lung disease in which scar tissue builds up and makes it harder to get oxygen into the blood.
Understanding Idiopathic Pulmonary Fibrosis
The scarring makes it hard for the lungs to move oxygen into the bloodstream. It usually affects people between ages 50 and 70. It belongs to a group called interstitial lung diseases (ILD). The course varies a lot from person to person.
Signs & symptoms
Symptoms vary from person to person. GARD lists these as the most common:
- Shortness of breath
- Persistent dry, hacking cough
- Loss of appetite
- Gradual weight loss
- Widened, rounded fingertips and toes (clubbing)
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
Autoimmune Association, Pulmonary Fibrosis Foundation and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Autoimmune Association, Pulmonary Fibrosis Foundation, Global Autoimmune Institute
- 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 Autoimmune 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's summary doesn't state a specific cause here. "Idiopathic" means the cause is not known.
Also known as: cryptogenic fibrosing alveolitis; idiopathic fibrosing alveolitis, chronic form; ipf; ipf - idiopathic pulmonary fibrosis
Patient organizations
- Autoimmune AssociationIdiopathic Pulmonary Fibrosis · United States
- Pulmonary Fibrosis FoundationIdiopathic Pulmonary Fibrosis · United States
- Global Autoimmune InstituteIdiopathic Pulmonary Fibrosis · United States
- Team TelomereIdiopathic Pulmonary Fibrosis · United States
- Allergy & Asthma Network Mothers of AsthmaticsIdiopathic Pulmonary Fibrosis · United States
- Global Fibrosis FoundationIdiopathic Pulmonary Fibrosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Idiopathic Pulmonary Fibrosis.
Explore research for Idiopathic Pulmonary Fibrosis
Explore actively recruiting Idiopathic Pulmonary Fibrosis studies with HealthSpark.
Find actively recruiting studies for Idiopathic Pulmonary Fibrosis 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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