Isolated Congenital Anosmia - Clinical and Daily Life Aspects of a Life without a Sense of Smell

Background: Isolated congenital anosmia is a disorder (ICA) characterized by not or only rudimentary developed central olfactory structures. This results in the lack of the sense of smell since birth. Although this phenomenon is known among clinicians almost no knowledge exists on how those people cope with the disorder. Material and Methods: 43 people with ICA were asked with a standardised questionnaire about when they first noticed their disorder, how they experience the lack of smelling ability and about different aspects of daily life. Results: ICA is detected by the patients self or by their parents at the age of 10 in average. However about 13 years pass, until the right diagnosis is confirmed. In contrast to people with acquired olfactory loos ICA patients have developed strategies to adapt to the deficit in daily life. Nevertheless they report increased social insecurity and more hazardous events. Conclusion: The results can be of advantage for clinicians and patients to get a better understanding of the disorder.