Overview
Secondary interstitial lung disease specific to childhood associated with a granulomatous disease is a rare lung condition that occurs in children as a result of an underlying granulomatous disorder. Granulomatous diseases are conditions where the immune system forms small clusters of inflammatory cells called granulomas. These granulomas can develop in the lungs and damage the delicate tissue between the air sacs (called the interstitium), making it harder for the lungs to exchange oxygen and carbon dioxide properly. This condition is considered 'secondary' because the lung disease is not the primary problem — it develops as a consequence of the underlying granulomatous condition, which may include diseases like sarcoidosis, chronic granulomatous disease, or other immune-related disorders that affect children. Children with this condition may experience progressive breathing difficulties, chronic cough, low oxygen levels, and reduced ability to exercise or play. Some children may also have symptoms related to their underlying granulomatous disease, such as skin rashes, joint pain, or enlarged lymph nodes. The severity can vary widely depending on the specific underlying cause and how much lung tissue is affected. Treatment focuses on managing the underlying granulomatous disease and supporting lung function. This may include immunosuppressive medications such as corticosteroids, oxygen therapy, and pulmonary rehabilitation. Early diagnosis and treatment of the underlying condition can help slow or prevent further lung damage. Because this is a complex condition, care typically involves a team of specialists working together.
Key symptoms:
Shortness of breath, especially during activityChronic cough that does not go awayRapid or labored breathingLow oxygen levels in the bloodReduced ability to exercise or playFatigue and low energyPoor weight gain or failure to thriveClubbing of the fingertips (rounded, enlarged fingertips)Wheezing or crackling sounds when breathingBluish color of the lips or skin during activityRecurrent lung infectionsChest pain or discomfortEnlarged lymph nodes
Variable
Can be inherited in different ways depending on the underlying gene
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Secondary interstitial lung disease specific to childhood associated with a granulomatous disease.
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Specialists
View all specialists →No specialists are currently listed for Secondary interstitial lung disease specific to childhood associated with a granulomatous disease.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Secondary interstitial lung disease specific to childhood associated with a granulomatous disease.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the specific underlying granulomatous disease causing my child's lung condition?,How much lung damage has already occurred, and is any of it reversible with treatment?,What medications will my child need, and what are the potential side effects we should watch for?,How often will my child need lung function tests and imaging to monitor the disease?,Are there any activities or environmental exposures my child should avoid?,Should my child have genetic testing to determine if the underlying condition is inherited?,Are there any clinical trials or new treatments available for this condition?
Common questions about Secondary interstitial lung disease specific to childhood associated with a granulomatous disease
What is Secondary interstitial lung disease specific to childhood associated with a granulomatous disease?
Secondary interstitial lung disease specific to childhood associated with a granulomatous disease is a rare lung condition that occurs in children as a result of an underlying granulomatous disorder. Granulomatous diseases are conditions where the immune system forms small clusters of inflammatory cells called granulomas. These granulomas can develop in the lungs and damage the delicate tissue between the air sacs (called the interstitium), making it harder for the lungs to exchange oxygen and carbon dioxide properly. This condition is considered 'secondary' because the lung disease is not the
At what age does Secondary interstitial lung disease specific to childhood associated with a granulomatous disease typically begin?
Typical onset of Secondary interstitial lung disease specific to childhood associated with a granulomatous disease is childhood. Age of onset can vary across affected individuals.