Living with Tubular duplication of the esophagus
A rare condition present at birth in which a second tube-like structure lies beside or inside the food pipe.
Understanding Tubular duplication of the esophagus
It is not part of a larger syndrome. It can cause trouble swallowing, nausea, vomiting, chest pain behind the breastbone, and breathing problems. It usually shows up in childhood.
Signs & symptoms
GARD doesn't list a separate symptom list. The summary describes these features:
- Trouble swallowing (dysphagia)
- Nausea and vomiting
- Chest pain behind the breastbone
- Noisy breathing (stridor)
- Repeated pneumonia
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 digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- 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 changes in genes (variants) cause this condition, but it doesn't name a specific gene.
Also known as: congenital tubular duplication of esophagus
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 Tubular duplication of the esophagus.
Explore research for Tubular duplication of the esophagus
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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