Living with Odontomatosis-aortae esophagus stenosis syndrome
A rare condition with growths in the esophagus and severe trouble swallowing.
Understanding Odontomatosis-aortae esophagus stenosis syndrome
GARD describes it as odontoma-dysphagia syndrome. It involves odontomas, which are masses of undifferentiated tissue in the esophagus, along with severe swallowing difficulty (dysphagia).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Trouble swallowing (dysphagia)
- Odontomas (tissue masses in the esophagus)
- Hardening and narrowing of the arteries (atherosclerosis)
- Liver problems (hepatic failure)
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 genetic specialists and gum, teeth and mouth specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- 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 National Foundation of Swallowing Disorders
- 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 cause this condition. It doesn't list a specific gene or how it is inherited.
Also known as: boder syndrome; odontoma dysphagia syndrome; odontomatosis (multiple odontomas) with dysphagia
Patient organizations
- National Foundation of Swallowing DisordersOdontomatosis-aortae esophagus stenosis syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Odontomatosis-aortae esophagus stenosis syndrome.
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