Living with Congenital anosmia
A condition in which a person is born unable to smell, either alone or as part of another genetic condition.
Understanding Congenital anosmia
It may occur alone or with a genetic disorder such as Kallmann syndrome or congenital insensitivity to pain. When it occurs alone, there is usually no family history, though some families have been reported. In most isolated cases, the genetic cause is unknown.
Signs & symptoms
GARD doesn't list specific symptoms for this condition beyond the inability to smell.
- Lifelong inability to smell
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
In most isolated cases the genetic cause is unknown. GARD lists autosomal dominant and X-linked inheritance.
Also known as: anic; isolated congenital anosmia
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 Congenital anosmia.
Explore research for Congenital anosmia
Explore actively recruiting Congenital anosmia studies with HealthSpark.
Find actively recruiting studies for Congenital anosmia 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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