Losing your sense of smell

Duncan Boak tells Ginny Smith about how he lost his sense of smell and how it changed his life...
26 November 2013

Interview with 

Duncan Boak, Fifth Sense

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Smell is a poorly understood sense, often thought to be less important that sight, or hearing. But strong links with the emotional centres of our brains mean that it is important in ways you might never have imagined...

Most of us will have experienced a temporary form of anosmia, or the loss of smell, whilst suffering from a cold, but what would it be like to lose the sense permanently? Duncan Boak, an anosmia sufferer himself, set up the UKs first charitable organisation supporting smell and taste disorder sufferers- the Fifth Sense. Ginny Smith met up with him at the Cambridge Science Centre's to find out more about the disorder.

Duncan - It's quite a common condition, more common than people think. But obviously, if you saw someone in the street who's got no sense of smell, you wouldn't know, would you? There are lots of different things that cause it - head injury, the common cold, chronic sinusitis, and some people are even born with no sense of smell.

Ginny - Is that something you suffer from yourself?

Duncan - Yes, I lost my sense of smell in 2005 after suffering quite severe head injury.

Ginny - Did you sort of wake up after having been knocked out with this head injury and just suddenly couldn't smell things?

Duncan - Well, I was in a hospital for a week, got out of hospital and the first time I noticed it was the first proper meal I'd eaten after getting out of hospital was a risotto my dad had made and I was having a glass of wine with it. I was eating and drinking and thinking, this doesn't really taste of anything. There's no flavour and it was sort of as a result of that and after that, I realized I actually couldn't smell anything at all.

Ginny - So, what was it like when you realised that? Did it feel like there was something missing in your life?

Duncan - Not at first, no. I went to my doctors to tell them about it and see what they'd say. The response I got was, "Oh, yeah. I've heard about this, it's happened before after a head injury. We don't know much about the sense of smell. There's no treatment available, in fact there are no cures at all. It might come back of its own accord, but if it doesn't, well that's it. You'll just have to get on with it. At least it's only your sense of smell. It could've been worse."  And that was my attitude really. After that, I thought well, I've been told nothing can be done. I'm not even going to think about it. I suppose I buried my head in the sand.

Ginny - I think that will probably be a lot of people's reaction that of all the senses, smell would probably be one of the least important to lose. I mean, you think of dogs needing a sense of smell, but humans, we don't seem to use it that much.

Duncan - I was aware of lots of ways in which my sort of life had changed over the years following the accident and could never really work out why. Basically nothing in my life was as enjoyable or as rich, as colourful, as vivid any experience as it was before. It wasn't until years later in 2011 and reading a book about someone elses experience that I actually started to learn about this and learn what the sense of smell actually did for me in the first place. That up until that point, I'd never even thought about. The thing about smell is, it works on a very sort of deep and quite a complex level. It's very much involved with our emotions, memory, with mood, and it's involved in all sorts of different aspects of life, but not in a way we'd ever really appreciate unless we thought about it.

Ginny - So, do we know how many people are affected by these sort of disorders?

Duncan - There's never been any sort of study done in the UK to establish the prevalence of anosmia. That's something fifth sense is looking to do in due course. We're reliant on estimates that have come from European and American studies which suggest that around 5% of the population are affected by loss of the sense of smell, whether total or severe reduction in. Fifth sense actually recently did a survey of all its members to establish and get some figures and get some data for the quality of life impact of smell disorders, smell loss. 50% of people surveyed say they suffer from depression, 60% said they've experienced feelings of isolation, feeling cut-off from friends and family, and 65% said it's really affected their relationship with partners, families and friends.

Ginny - Wow! That's not good numbers. Is there anything that can be done to help sufferers? Is there any way of making the loss of smell better or just making the quality of life better?

Duncan - The interesting thing is, there are potentially treatments available. Now, treatment largely depends upon the cause. In my case, head injury, it can be down to two main reasons. One of which being damage to the frontal lobes of the brain itself. If that's the case, then it's unlikely that it will never return. However, there are cases even then where people have spontaneously almost, got their sense of smell back after 10 years, there are stories like that.

But for people with sinus problems, for people who've suffered smell loss as a result of say, a cold, there are potentially things that can be done. Fifth Sense is working with the sort of handful of leading medical specialists in the UK who have an interest in diagnosing and treating patients with smell and taste disorders. One of which is Mr. Carl Philpott who runs the UK's first NHS Clinic specialising in smell and taste disorders. Now, Mr. Philpott has said that of the patients that have been through his clinic, about 75% of them have a potentially treatable problem. Most people though will go to their doctors and are told that nothing can be done. So, one of the important things that Fifth Sense is doing is acting as a signpost to these medical specialists for people. Sort of saying, "Look, these guys are out there and treating people. Speak to your GP. Try and get a referral to them and perhaps something can be done."

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