Living with Idiopathic pulmonary hemosiderosis
A rare lung disease with repeated bleeding into the lungs, which can cause anemia and lung scarring.
Understanding Idiopathic pulmonary hemosiderosis
The body removes most of the blood but leaves iron behind, which over time can scar the lungs (fibrosis). It can cause anemia and lung disease. Symptoms can look like pneumonia. It often begins in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cough
- Coughing up blood (hemoptysis)
- Tiredness (fatigue)
- Low iron anemia
- Pale skin
- Enlarged liver and spleen
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
Pulmonary Fibrosis Foundation and Children's Interstitial Lung Disease Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Pulmonary Fibrosis Foundation, Children's Interstitial Lung Disease 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 Pulmonary Fibrosis Foundation 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
The cause is unknown. Diagnosis is based on ruling out other kinds of pulmonary hemosiderosis. GARD lists autosomal dominant inheritance.
Also known as: alveolar hypoventilation syndrome; brown induration; brown induration of lung; brown lung; iph - idiopathic pulmonary hemosiderosis; pulmonary hemosiderosis
Patient organizations
- Pulmonary Fibrosis FoundationIdiopathic pulmonary hemosiderosis · United States
- Children's Interstitial Lung Disease FoundationIdiopathic pulmonary hemosiderosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Idiopathic pulmonary hemosiderosis.
Explore research for Idiopathic pulmonary hemosiderosis
Explore actively recruiting Idiopathic pulmonary hemosiderosis studies with HealthSpark.
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- 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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