Living with Idiopathic chronic eosinophilic pneumonia
A rare lung disease that starts slowly and causes cough, wheezing, and breathing trouble.
Understanding Idiopathic chronic eosinophilic pneumonia
People may also feel tired, lose weight, and feel generally unwell. Those with a history of asthma may be more likely to develop it. Most people have too many eosinophils, a type of white blood cell, in their blood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Trouble breathing
- Dry cough
- Wheezing
- Low blood oxygen
- Asthma
- High eosinophil count in the blood
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 allergy and immune system 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
Children's Interstitial Lung Disease Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: 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 Children's Interstitial Lung Disease 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
GARD doesn't describe a cause for this condition yet. It notes that people with a history of asthma may be more likely to develop it.
Also known as: idiopathic chronic eosinophilic pneumonitis
Patient organizations
- Children's Interstitial Lung Disease FoundationIdiopathic chronic eosinophilic pneumonia · United States
- Allergy & Asthma Network Mothers of AsthmaticsIdiopathic chronic eosinophilic pneumonia · United States
You are more than your diagnosis
Perspectives from people navigating life with Idiopathic chronic eosinophilic pneumonia.
Explore research for Idiopathic chronic eosinophilic pneumonia
Explore actively recruiting Idiopathic chronic eosinophilic pneumonia studies with HealthSpark.
Find actively recruiting studies for Idiopathic chronic eosinophilic pneumonia 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Idiopathic chronic eosinophilic pneumonia studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Idiopathic chronic eosinophilic pneumonia
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Idiopathic chronic eosinophilic pneumonia experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.