Living with Primary interstitial lung disease specific to childhood
A group of rare lung diseases in babies, children and teens that make it harder for the lungs to take in oxygen.
Understanding Primary interstitial lung disease specific to childhood
In these diseases, the lungs cannot move oxygen into the blood and remove carbon dioxide as well as they should. This can cause mild to very severe breathing problems. The air sacs and supporting tissue are often affected, and fluid and other material can build up. All of them reduce how much oxygen reaches the body, but the signs and causes can differ among children.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. It describes these effects:
- Breathing problems from mild to severe
- Trouble getting enough oxygen
- Fluid and material building up in the lungs
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
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: 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 says the causes can differ between children and doesn't name a single cause or gene.
Also known as: child; children's interstitial lung disease; interstitial lung disease of childhood; primary ild specific to childhood
Patient organizations
- Children's Interstitial Lung Disease FoundationPrimary interstitial lung disease specific to childhood · United States
- NEHI Research FoundationPrimary interstitial lung disease specific to childhood · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary interstitial lung disease specific to childhood.
Just His Mom: Learning to Mother a Child With a Rare Disease
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The Invisible Job: What Caregiving for a Rare Disease Really Looks Like
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My Story: Kaya’s Light and the Call to Awareness
Read articleExplore research for Primary interstitial lung disease specific to childhood
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