Intralobar congenital pulmonary sequestration

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Overview

Intralobar congenital pulmonary sequestration (also called intralobar pulmonary sequestration or intralobar sequestration) is a rare birth defect of the lungs. In this condition, a mass of abnormal lung tissue forms within the normal lung but does not connect to the airways like healthy lung tissue does. This means the abnormal tissue cannot function in breathing. Instead, it receives its blood supply from an abnormal artery, usually coming directly from the aorta (the body's main artery), rather than from the normal pulmonary arteries. Because this tissue is trapped inside the normal lung lining (the pleura), it is called 'intralobar,' distinguishing it from the 'extralobar' type, which sits outside the lung's covering. Many people with intralobar sequestration may not have symptoms early in life, but the abnormal tissue is prone to repeated infections. Common symptoms include recurrent pneumonia, chronic cough, and sometimes coughing up blood. Most cases are found in the lower lobes of the lung, especially on the left side. Diagnosis is often made after someone has repeated lung infections that keep coming back in the same area. The main treatment is surgical removal of the affected portion of the lung, which is usually curative. In most cases, surgery leads to excellent outcomes and prevents further infections. Some newer approaches include blocking the abnormal blood vessel using minimally invasive techniques (embolization), though surgery remains the standard of care. Early diagnosis and treatment help prevent complications such as chronic lung damage from repeated infections.

Also known as:

Key symptoms:

Recurrent pneumonia in the same area of the lungChronic coughCoughing up blood (hemoptysis)Chest painShortness of breathFever with lung infectionsWheezingFatigue from repeated infectionsAbnormal breath sounds on one side of the chestLung abscess formationChronic sputum production

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Intralobar congenital pulmonary sequestration.

View clinical trials →

No actively recruiting trials found for Intralobar congenital pulmonary sequestration at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Intralobar congenital pulmonary sequestration community →

No specialists are currently listed for Intralobar congenital pulmonary sequestration.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Intralobar congenital pulmonary sequestration.

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Community

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Latest news about Intralobar congenital pulmonary sequestration

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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.Where exactly is the sequestration located in my (or my child's) lung, and how large is it?,What type of surgery do you recommend, and can it be done with minimally invasive techniques?,When is the best time to have surgery — should we wait or act now?,What are the risks of surgery compared to the risks of leaving it untreated?,How many surgeries like this have you performed, and what outcomes do you typically see?,Will my (or my child's) lung function be normal after surgery?,Are there any long-term follow-up appointments or imaging studies needed after treatment?

Common questions about Intralobar congenital pulmonary sequestration

What is Intralobar congenital pulmonary sequestration?

Intralobar congenital pulmonary sequestration (also called intralobar pulmonary sequestration or intralobar sequestration) is a rare birth defect of the lungs. In this condition, a mass of abnormal lung tissue forms within the normal lung but does not connect to the airways like healthy lung tissue does. This means the abnormal tissue cannot function in breathing. Instead, it receives its blood supply from an abnormal artery, usually coming directly from the aorta (the body's main artery), rather than from the normal pulmonary arteries. Because this tissue is trapped inside the normal lung lin

How is Intralobar congenital pulmonary sequestration inherited?

Intralobar congenital pulmonary sequestration follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.