Living with Tracheobroncheopathia osteoplastica
A rare condition in which bone and cartilage growths form in the large airways and may cause breathing symptoms.
Understanding Tracheobroncheopathia osteoplastica
The growths (nodules) stick out into the windpipe and its main branches and can block the airway. People may have ongoing or repeated breathing symptoms and repeated infections. It can appear at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Wet cough
- Shortness of breath with activity
- Repeated respiratory infections
- Bronchitis or pneumonia
- Narrowed windpipe (tracheal stenosis)
- Fever
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.
Care & treatment
- Care team
- 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
GARD says the cause of TO is not currently known.
Also known as: tracheobronchopathia osteochondroplastica; tracheopathia osteochondroplastica; tracheopathia osteoplastica
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 Tracheobroncheopathia osteoplastica.
Explore research for Tracheobroncheopathia osteoplastica
Explore actively recruiting Tracheobroncheopathia osteoplastica studies with HealthSpark.
Find actively recruiting studies for Tracheobroncheopathia osteoplastica 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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