Congenital and Pseudocongenital Anosmia

    Congenital anosmia is anosmia that is present from birth. According to the Taste and Smell Center at the University of Connecticut (2013), there are many possible reasons for a life-long inability to smell, but the most frequently described, (1 in 50,000 females and 1 in 10,000 males) is Kallman's syndrome. This syndrome runs in families and is manifested by anosmia and hormonal problems that prevent the development of normal sexual characteristics (lack of onset of normal menstruation, poor breast development, sparse or absent armpit, facial and pubic hair, small testicles and penis, and sometimes sterility.

    The UConn Taste and Smell Center also notes that some people who can not remember ever being able to smell may well have been born with a normal sense of smell but lost it early in life. Head trauma and viral infection are listed as the most likely causes of loss of the sense of smell so early in life that the adult never even remembers being able to smell. I shall refer to such cases as "pseudocongenital anosmia."

    Many months ago I posted to the anosmia discussion group at Yahoo my belief that congenital or pseudocongenital anosmia could, in some (probably few) cases, result from the same sort of inflammatory processes that prevent me from being able to smell. That is, if an allergic or other inflammatory process was present from birth, or at least from as early as one can remember, and if that process prevented scented air from reaching the olfactory epithelium, or pinched the olfactory fibers as they pass through the cribriform plate, then a person with congenital anosmia of this type could benefit from the same sort of treatments that have benefited me (most especially the careful use of systemic steroids, most notably Kenalog, along with surgery when absolutely necessary). It now appears that we have such a case represented among the subscribers to this list, Greg Frude.

    Like Greg, I remember always having had trouble breathing through my nose, but the problem was not bad enough to cause anosmia until adulthood. Like Greg, I had a deviated septum, which has now been surgically corrected. Like Greg, I once relied on over-the-counter nasal decongestant sprays to relieve my nasal congestion and allow me to breathe through my nose for a while, but I avoid these now due to their "rebound" effect. I should note that some have suggested that the rebound effect is actually due to preservatives put into these sprays by the manufacturer -- that is, it is an allergic reaction to the preservatives rather than an opponent process. I have not, however, seen convincing evidence of this speculation.

    I also suggested to the group that I am in a situation where I can experience what it is like to be anosmic and what it is like to have a fairly normal sense of smell, since I travel back and forth between these two worlds every 6-10 months. I made the following assertion "I can assure you that one's experience of taste without olfaction is nothing like that with olfaction. It is like viewing a rainbow in black and white." Several of the subscribers to this list scoffed at this. Subscribers with congenital anosmia opined that they have a perfectly normal experience of taste/flavor, not affected by lack of olfaction. Liz hypothesized that only those who have lost their sense of smell have less than a normal experience of taste/flavor, that those with congenital anosmia have, by some mysterious compensatory mechanism, normal experience of taste/flavor despite having no sense of smell. A summary of this discussion can be found here.

    Joel very eloquently suggested such a compensatory mechanism and concluded "Karl, I do not think that you are in the best position to appreciate the experience of the congenital anosmic." I pointed Joel to empirical evidence that such mechanisms are myth not fact and added "It certainly would be interesting to find a case where a person was anosmic from birth but gained a sense of smell later in life, after the development of gustatory schema - but lacking such a case, the best we can do is share our experiences and speculate regarding what the other perceives." Greg may well be this case.

    In describing his experience with toast, Greg said "I couldn't believe how much depth that toast had, it was like toast but in "color", as opposed to the toast in "black and white" that I have always known." Hmmm, that sounds a lot like my description of taste/flavor without olfaction.

    I certainly hope that Greg continues to receive treatments that are successful in restoring his sense of smell and that he keeps us all posted of the experience. Thanks, Greg, for sharing.

    Men generally fix their affections more on what they are possessed of, than on what they never enjoyed.  For this reason, it would be greater cruelty to dispossess a man of any thing than not to give it him. -- David Hume, A Treatise on Human Nature.

    You don't miss your water until your well runs dry.  African American Proverb.  Song by William Bell. Performed also by Taj Mahal.

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This page most recently revised on 16-October-2022.