Living with IgG4-related mediastinitis
A condition with scar tissue in the chest between the lungs that can press on the airways and blood vessels.
Understanding IgG4-related mediastinitis
Scar tissue builds up in this area in varying amounts. It may block airways and affect lung function, or compress blood vessels and slow blood flow to and from the heart.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Blocked airways that can affect lung function
- Compressed blood vessels near the heart
- Scar tissue in the chest
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 autoimmune and inflammatory disease specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 exact cause isn't fully understood, but it is not inherited. Many cases are linked to a fungal infection called histoplasmosis.
Also known as: fibrosing mediastinitis; fibrosis of mediastinum; fibrous mediastinitis; idiopathic hilar fibrosis; idiopathic mediastinal fibrosis; mediastinal fibrosis
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with IgG4-related mediastinitis.
Explore research for IgG4-related mediastinitis
Explore actively recruiting IgG4-related mediastinitis studies with HealthSpark.
Find actively recruiting studies for IgG4-related mediastinitis 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 IgG4-related mediastinitis 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 IgG4-related mediastinitis
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 IgG4-related mediastinitis 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.