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How COVID-19 Is Advancing Our Understanding of Smell Loss

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It was the middle of April, and I had been stuck indoors for a couple of weeks. It was the most beautiful spring evening, and I took the dogs for our daily walk. Passing a neighbour at some distance, she waved to me and called out, “Oh, don’t you have a charity that has to do with anosmia?”

I learned the word for the loss of smell myself in 2012, when it happened to me after a simple (non-COVID-related) virus. And since then, through my recovery and the eventual birth of my charity, AbScent, the challenge has been to raise awareness of this invisible condition. I have never written an article on the subject that has not included the line: “the loss of smell, also known as anosmia…” An uphill battle, because anosmia is invisible. And even when you have explained to someone what it is, you could spend hours telling them what it is like and still not scratch the surface. And yet. My neighbour, who has no specialist knowledge of medicine or COVID-19, now knows the word “anosmia,” knows what it is and the role it plays in the coronavirus and inquired about it over the fence on an evening in April 2020.

I’ve been working with patients who have this condition since 2015. Some have had post-viral olfactory loss like I did, others come to our group because of head injuries, polyps and other sinus diseases as well as other conditions like Parkinson’s disease. Smell loss, especially when it is profound, as it often is with head injuries, can have life-altering consequences. There is a well-established link, for instance, between smell loss and a poor quality of life. There are lots of challenges for the patient, starting with talking to doctors, who are sometimes unaware of how hard it can be to live with the condition.

In my work with research facilities who are in a position to help us, such as the Monell Center in Philadelphia, we often discuss what can be done to raise awareness. Anosmia Awareness Day was started a few years ago, and that’s a good reason to share the message on social media annually. But it was hard to find clever ideas that would bring this topic out into the open. To find the thing that would put the word “anosmia” into common parlance. And then COVID-19 happened. Turns out, this terrible pandemic has had a wisp of a silver lining for those with all kinds of smell disorders: raised awareness.

My first indication that COVID-19 might affect the sense of smell came in February in the form of a tweet from a patient in Iran. He asked for my help and urged me to take the problem seriously. “Thousands of people are losing their sense of smell,” went a follow-up DM. I mentioned this to one of my trustees, an ENT in London.

The next indication came from an Italian ENT who contacted me — not because he was seeing sudden smell loss on the front line in northern Italy where he worked, but because he had suddenly lost his sense of smell with no other symptoms. We met on Zoom the same day. I was curious and worried. How is it that people could lose their sense of smell so suddenly? And with no other symptoms? Over the years I have spoken to thousands of patients — mostly through the internet but many in person — and this was something new.

Within weeks, my role as a patient advocate had changed irrevocably. One week I was working quietly, with a steady growth of about 1% a week in membership. Four months later, our numbers had quadrupled.

There is an important message here for patient advocacy. My role is to listen to and be a sounding board for patients all over the world. But that is only the most obvious role, as patient advocates also have a duty to represent these patients to doctors, research bodies, public policy makers and the media. It has become clear to me that the job I used to think I had has now changed. The world of anosmia – all etiologies, not just COVID-19 – has tilted on its axis and we won’t know for some time just how much this will change patient care.

The Global Consortium for Chemosensory Research is a recently formed body of over 450 scientists, researchers and patient advocates from all over the world who joined together in March on an urgent basis to address the role of smell and taste loss in the context of COVID-19. I’m proud to represent the countless thousands of patients worldwide who are suffering the loss of this most misunderstood sense within the leadership of this organisation.

Not only am I striving to keep patients represented, but I am also combing our discussion group, now numbering 2,200, for clues to help researchers understand more about outcomes at four weeks, six weeks, 10 weeks, after the infection. Scientists have to wait for peer-reviewed published research upon which to base their hypotheses. But with day-by-day developments, both in patient recovery as well as new research published, the trends spotted in the Facebook discussion group can assist in research enquiries. Never has the collaboration of patients, and the doctors and researchers trying to help them, felt so immediate.

Do we still need to raise awareness about anosmia? Sure. And we need to keep talking about it and working toward change in the way our doctors respond to a condition with few obvious interventions. But with 4.6 million cases of COVID-19 worldwide, the problem of smell loss, and a persistent problem in this regard, is not going away soon. Now is the time to adapt our services and provide the help and support that will be sorely needed.

Header image via fizkes/Getty Images

Originally published: May 27, 2020
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