Congenital anosmia – Fifth Sense
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Whilst the majority of people with anosmia have acquired this at some point during their lives, there is a smaller but not insignificant number of people who have had their condition from birth. This is known as congenital anosmia.

Congenital anosmia is quite rare. Accidents or rhinological problems that occur in childhood can result in a loss of smell that isn’t necessarily diagnosed at the time, and because of this people can grow up thinking that they have never had a sense of smell, which may not actually be the case.

People with ‘true’ congenital anosmia often have other family members with the same condition, which suggests that the cause may be due to genetic abnormalities. Unfortunately, at present the reasons for this aren’t well understood.

There is a condition, Kallman’s Syndrome, where congenital anosmia is a symptom. Kallman’s is characterised by a failure to start or fully complete puberty naturally.

What is it like to have never had a sense of smell?

Author and Fifth Sense member Jackie Kowalczyk was born without a sense of smell, as were her two children. She has written a fascinating and very moving article for Fifth Sense about how this has affected all their lives, which you can read here.

Another Fifth Sense member who, as far as she is aware, has never had a sense of smell is Sarah Kathleen Page. Sarah is a photographer, and one of her projects was focused on anosmia. To see it, visit her website at http://www.sarahkathleenpage.co.uk/anosmia

Sarah and Fifth Sense Founder Duncan Boak discussed their own respective experiences of congenital and acquired anosmia. An extract of their conversation was featured on the website of the AHRC-funded Rethinking the Senses project, under the title Lives without a Sense of Smell.

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