Living with Thoraco-abdominal enteric duplication
A rare condition with cyst-like tube shapes in the chest and belly, often with spine differences.
Understanding Thoraco-abdominal enteric duplication
Some cysts contain stomach-type lining. Babies often show breathing trouble, and older people may have heartburn, belly pain, vomiting, or black stools (melena). Spine differences in the lower neck are often present. Complications can include bowel blockage, a tear in the bowel, and a bowel fold (intussusception). It is usually noticed in infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cyst-like tubes in the chest or belly
- Breathing difficulty (respiratory insufficiency)
- Enlarged liver (hepatomegaly)
- Intestines that rotated abnormally (intestinal malrotation)
- Narrowing of the first part of the small intestine (duodenal stenosis)
- Missing ribs
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.
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 Thoraco-abdominal enteric duplication.
Explore research for Thoraco-abdominal enteric duplication
Explore actively recruiting Thoraco-abdominal enteric duplication studies with HealthSpark.
Find actively recruiting studies for Thoraco-abdominal enteric duplication 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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