Living with Anotia
A condition present from birth in which the outer ear and ear canal are missing.
Understanding Anotia
It is the most extreme form of microtia, which means a very small outer ear. It can come with hearing loss caused by sound not reaching the inner ear (conductive hearing loss), attention difficulties, and delayed language development. It is noticed in newborns and infants.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but its summary describes these features:
- Complete absence of the outer ear
- Absent ear canal
- Hearing loss from sound not reaching the inner ear
- Attention difficulties
- Delayed language development
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 ear, nose, and throat 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
- Ear, nose, and throat specialists (otolaryngologists); 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 (also called variants) cause anotia but doesn't list a specific gene or inheritance pattern.
Also known as: absent ear; absent ears; agenesis of external ear; congenital absence of auricle; congenital absence of ear auricle; congenital absence of external ear
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 Anotia.
Explore research for Anotia
Explore actively recruiting Anotia studies with HealthSpark.
Find actively recruiting studies for Anotia 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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