Annals of Anosmia 9: Awareness or Cure?

John Edwin Rhodes, M.D.

I get asked about smell loss a lot—by friends, neighbors, relatives, in-laws, and complete strangers. These conversations inevitably leave me feeling depressed. All I can do is explain the basic clinical facts and offer the glimmer of hope that their condition might improve on its own. I can’t tell them about promising new clinical research or therapies under development because there are none. And the fact that after decades of substantial research funding by NIH there are no therapies for smell loss is more than frustrating—it’s a scandal.

The lack of clinical progress goes back a long way. Consider the speech given in 1890 by John Edwin Rhodes, M.D., a graduate of the University of Chicago and Rush Medical College and a pillar of the ENT community. His topic was “Anosmia” and his published text is a succinct statement of clinical knowledge at the time. Here’s the key bit:

No treatment has been suggested that will relieve a case of true anosmia. If dependent upon local conditions, as deformity of nasal structure, excessive hypertrophy, or nasal polypi, surgical measures may result in complete, or at least partial relief.

This was the state of affairs in 1890 and it is a passable summary of where we stand today, 125 years later.

Sure, we now have more precise and rigorous tests for diagnosing olfactory dysfunction—we can grade smell loss into anosmia and various shades of hyposmia. We have precise anatomical descriptions of the pathological changes to the olfactory tissue in the nose. We know how brain areas linked to the olfactory cells of the nose shrink after an extended period of anosmia. We can confirm with EEG and fMRI and computer-controlled air-dilution olfactometry what John Edwin Rhodes observed by himself in a nineteenth century consulting room. We have filled in the details, but the big picture hasn’t changed a bit.

Individual cases of restored smell are newsworthy; most involve a peripheral cause, as in the dramatic recent case of rugby player Edward Baker. In the case of perfumer Kim Spadaro, a meningioma pressing on her olfactory nerves was resolved surgically, resulting in a happy restoration of smell.

For those whose anosmia results from head trauma or flu the prospects are bleak. Go to ClinicalTrials.gov and search for “smell loss.” You’ll get 30 results, the vast majority of which concern smell impairment as a biomarker for other diseases. There are drug trials for allergic rhinitis and polyps, but nothing for primary anosmia resulting from head injury or flu. There is no therapy in sight and we are no closer to a cure than was Dr. Rhodes.

Meanwhile, anosmia has enjoyed a recent vogue of sorts. In previous Annals of Anosmia posts I noted the rise of a new features-page genre—the “first-person anosmic” essay—and its ritualized rhetorical elements. (In the mid-aughts these included a recitation of doctors consulted and a reference to the 2004 Nobel Prize.) As night follows day, magazine pieces became book proposals. Among the results were Bonnie Blodgett’s Remembering Smell: A Memoir of Losing—and Discovering—the Primal Sense, and Molly Birnbaum’s Season to Taste: How I Lost My Sense of Smell and Found My Way.

In an essay posted a year and a half ago, Rebecca Steinitz pithily described the standard narrative and how it doesn’t square with her experience as an anosmic from birth.

I only discovered the word for people like me a few years ago. We are anosmic; we have anosmia: lack of the sense of smell.

Sometimes anosmia is defined as loss of the sense of smell. When people lose their sense of smell, they wax irate and nostalgic. They write articles in the New York Times about the tragedy and danger of not being able to smell burnt toast and how their friends don’t understand. They write books about traveling the world, searching for smell. They almost always regain what they have lost, because that is the nature of narratives of loss: you lose, you suffer, you recover.

Then there are those of us who never had what we’ve supposedly lost.

Over at New Scientist, anosmic Mick O’Hare took things to a new level of meta by reviewing an art installation by Eléonore de Bonneval called “Anosmia: Lives Without a Sense of Smell” which took place at the Kenzo Parfums showroom in Paris.

The biggest news on the anosmia front is the increase in advocacy. UK resident Duncan Boak, rendered anosmic by a traumatic brain injury in 2005, founded the organization Fifth Sense, whose purpose is to provide support and advice to those who suffer from smell and taste disorders (a worthy goal), and to address society’s lack of understanding about these disorders (a somewhat amorphous goal).

Among other things, Boak calls for scientists to saddle up and join the cause:

It’s time for science to come to the aid of olfaction, and we must harness it to develop our understanding of the role and function of the sense of smell, and treatment for olfactory disorders.

Newsflash for Mr. Boak: scientists are definitely aware of olfactory disorders. They have been getting NIH grant money for decades by claiming their research might eventually help people who suffer from anosmia. He might want to ask them why the millions of dollars spent to date have produced so little.

Fifth Sense also works to raise awareness of anosmia among the general public. In this they are joined by the Monell Chemical Senses Center (where I once worked long ago). Getting the word out on social media about support groups and coping strategies is certainly worthwhile. But what else can public awareness hope to accomplish in the absence of treatment options?

Monell, for its part, has tied the awareness campaign to a fundraising effort. Called “A sense of hope”, it comes with tagline (“Imagine life without a sense of smell”), celebrity spokesman (Bill Pullman) and monetary goal ($1.5 million over three years).

Monell does some great research on smell and taste. I admire my many former colleagues who work there. However, the anosmia campaign makes me uneasy. Given the long, dismal history of the field, is it wise to raise money on a promise you are unlikely to keep?