by: Elena Vosnaki
Although we all know about conditions such as deafness and blindness, the loss of the sense of smell, officially termed "anosmia" from the Greek α- (i.e. without) and οσμή (i.e. sense of smell) is largely not only unknown but also unfathomable. Most people simply don't realize the debilitating aspects of the loss of smell. Beyond not being able to smell perfumes, anosmics have difficulty savoring their food, being alert to signs of fire or gas leak, and feeling that touch of familiaritythat smells add to our relationships and surroundings. Naturally I had to investigate more.
"Smell", from Allegory of the Senses, Jan Brueghel the Elder
Duncan Boak is the founder of Fifth Sense, a UK charity and research databank who kindly answered me all the questions that are on the tip of the tongue of every scent appreciative person upon learning that such a condition can be developed. Please find out what anosmia is and what you could do about it.
Elena Vosnaki:
Duncan, like most people who haven't personally experienced this loss I came upon Fifth Sense thanks to searching about anosmia out of a general interest in the sense of smell. How did you get involved with Fifth Sense and the case for anosmia? Tell us a bit more about the charity.
Duncan, like most people who haven't personally experienced this loss I came upon Fifth Sense thanks to searching about anosmia out of a general interest in the sense of smell. How did you get involved with Fifth Sense and the case for anosmia? Tell us a bit more about the charity.
Duncan Boak:
I lost my sense of smell as the result of a head injury I sustained in 2005. I was basically told by my doctor that very little was known about the sense of smell, or smell loss, and that nothing could be done. And I just accepted that, because the sense of smell was something I'd taken for granted, and it's loss didn't seem like that big a deal compared to what could have happened through my accident. It wasn't until 2011 when I read a book called Season to Taste by Molly Birnbaum about her own experience that I started to learn about how important the sense of smell actually is, and was able to appreciate how its loss had impacted upon my life. I was put in contact with a Consultant Surgeon who treats patients with smell and taste disorders, and decided to set up the organization which I wished, in hindsight, had been there for me following my accident.
I lost my sense of smell as the result of a head injury I sustained in 2005. I was basically told by my doctor that very little was known about the sense of smell, or smell loss, and that nothing could be done. And I just accepted that, because the sense of smell was something I'd taken for granted, and it's loss didn't seem like that big a deal compared to what could have happened through my accident. It wasn't until 2011 when I read a book called Season to Taste by Molly Birnbaum about her own experience that I started to learn about how important the sense of smell actually is, and was able to appreciate how its loss had impacted upon my life. I was put in contact with a Consultant Surgeon who treats patients with smell and taste disorders, and decided to set up the organization which I wished, in hindsight, had been there for me following my accident.
Elena:
Do you have a statistic of how many people are affected by this debilitating trait? Do you think there are more of them suffering in silence? Which aspects of a patient's life are more affected and what do they complain most about?
Do you have a statistic of how many people are affected by this debilitating trait? Do you think there are more of them suffering in silence? Which aspects of a patient's life are more affected and what do they complain most about?
Duncan:
Studies done in the US and Europe have suggested that around 5% of the population have anosmia. What I would say is that not one person's experience is exactly the same as another's—the sense of smell affects us in complex ways, as does its loss. It can be hugely damaging to some people, who feel an emotional loss that impacts on their enjoyment of life, their relationships, and the way in which they connect with the world. Fifth Sense started surveying its members in 2013 to establish the impact of olfactory disorders on their quality of life and the results demonstrate this quite starkly. 42% of respondents have suffered from depression, with 54% reporting difficulties in their relationships with partners, family or friends.
Studies done in the US and Europe have suggested that around 5% of the population have anosmia. What I would say is that not one person's experience is exactly the same as another's—the sense of smell affects us in complex ways, as does its loss. It can be hugely damaging to some people, who feel an emotional loss that impacts on their enjoyment of life, their relationships, and the way in which they connect with the world. Fifth Sense started surveying its members in 2013 to establish the impact of olfactory disorders on their quality of life and the results demonstrate this quite starkly. 42% of respondents have suffered from depression, with 54% reporting difficulties in their relationships with partners, family or friends.
Elena:
Please describe the basic nuances of a distorted sense of smell, as I understand that there is no blanket condition for everyone suffering from a diminution of smell.
Please describe the basic nuances of a distorted sense of smell, as I understand that there is no blanket condition for everyone suffering from a diminution of smell.
Duncan:
Disturbances of the sense of smell often accompany its loss. Parosmia is used to describe a distorted sense of smell, when many things smell unpleasant. Imagine anything you smell being revolting to the point of making you feel sick, with the flavor of every meal being repulsive. I have spoken to people who have struggled to eat due to most foods making them nauseous. Phantosmia literally means "phantom smells"—people can smell real odors when they're not actually there. A friend of mine has experienced it, with a strong smell of garlic being a regular occurrence.
Disturbances of the sense of smell often accompany its loss. Parosmia is used to describe a distorted sense of smell, when many things smell unpleasant. Imagine anything you smell being revolting to the point of making you feel sick, with the flavor of every meal being repulsive. I have spoken to people who have struggled to eat due to most foods making them nauseous. Phantosmia literally means "phantom smells"—people can smell real odors when they're not actually there. A friend of mine has experienced it, with a strong smell of garlic being a regular occurrence.
Elena:
Uncanny! What hopes do anosmic patients have of finding a permanent cure? Which methods have shown solid results in treatment?
Uncanny! What hopes do anosmic patients have of finding a permanent cure? Which methods have shown solid results in treatment?
Duncan:
Rather than talking about cures, it's better to talk about treatment, but this does largely depend on what caused the loss. Sinus problems, viruses and head injuries are all common causes of anosmia and other olfactory disorders, and correct diagnosis and treatment from a clinician with knowledge of these conditions is very important. There are ways that people affected by such a disorder can try to manage or ameliorate their problem. Sinus rinsing can help reduce congestion and inflammation for patients with sinus problems. We recommend "smell training"' to all our members—see www.fifthsense.org.uk/smell-training for info.
Rather than talking about cures, it's better to talk about treatment, but this does largely depend on what caused the loss. Sinus problems, viruses and head injuries are all common causes of anosmia and other olfactory disorders, and correct diagnosis and treatment from a clinician with knowledge of these conditions is very important. There are ways that people affected by such a disorder can try to manage or ameliorate their problem. Sinus rinsing can help reduce congestion and inflammation for patients with sinus problems. We recommend "smell training"' to all our members—see www.fifthsense.org.uk/smell-training for info.
A major problem is the relative lack of clinical research undertaken in this area. Clinicians such as Mr. Philpott in the UK, Thomas Hummel in Germany, and the Monell Chemical Senses Center in the US are engaged in research but there are obstacles, with lack of funding being an obvious one. Much more work needs to be done to better understand these conditions, provide evidence for existing treatments, and of course develop new ones. A key part of Fifth Sense's remit in the longer term is to fund clinical research that can benefit patients.
Elena:
What can one do to seek the appropriate help to their plight, though?
What can one do to seek the appropriate help to their plight, though?
Duncan:
Fifth Sense works with a number of clinicians who have an interest in diagnosing and treating patients, where possible. For more information visitwww.fifthsense.org.uk/clinics. Unfortunately there are cases where no cause can be found—again, there is need for much more research. One very important aspect of Fifth Sense's work is continuing to develop our community for smell and taste disorder sufferers, bringing people together to get the understanding that they perhaps haven't had elsewhere. Our UK-based Regional Hub network is a key part of this.
Fifth Sense works with a number of clinicians who have an interest in diagnosing and treating patients, where possible. For more information visitwww.fifthsense.org.uk/clinics. Unfortunately there are cases where no cause can be found—again, there is need for much more research. One very important aspect of Fifth Sense's work is continuing to develop our community for smell and taste disorder sufferers, bringing people together to get the understanding that they perhaps haven't had elsewhere. Our UK-based Regional Hub network is a key part of this.
Elena:
Do you believe that the medical profession is updated on this issue so as to direct patients in the best possible way? What are the alternatives?
Do you believe that the medical profession is updated on this issue so as to direct patients in the best possible way? What are the alternatives?
Duncan:
There's a great lack of understanding about the impact that olfactory disorders can have on people—that's the first problem. The response of "well, it's only your sense of smell" is one that I hear only too often in accounts from Fifth Sense members of consultations with doctors. On top of that, there aren't enough clinicians with knowledge or expertise in this area, so patients end up being told that nothing can be done. We are working to raise awareness amongst the medical profession, for example participating in conferences for UK ENT professionals such as the British Rhinological Society meeting we were involved in last year.
There's a great lack of understanding about the impact that olfactory disorders can have on people—that's the first problem. The response of "well, it's only your sense of smell" is one that I hear only too often in accounts from Fifth Sense members of consultations with doctors. On top of that, there aren't enough clinicians with knowledge or expertise in this area, so patients end up being told that nothing can be done. We are working to raise awareness amongst the medical profession, for example participating in conferences for UK ENT professionals such as the British Rhinological Society meeting we were involved in last year.
Elena:
People who are anosmic might fend for themselves now that more information is available. Yet how can awareness be raised to the general public?
People who are anosmic might fend for themselves now that more information is available. Yet how can awareness be raised to the general public?
Duncan:
A key part of our strategy for changing the way that olfactory disorders are perceived is to educate the public on how important the sense of smell is to our lives. The experiences of our members are incredibly important to this—who better to talk about how smell affects us than someone who has lived both with and without it? We're also developing partnerships with individuals and organizations who value the senses of smell and taste as much as we do, which will help us to spread our message and further develop our work.
A key part of our strategy for changing the way that olfactory disorders are perceived is to educate the public on how important the sense of smell is to our lives. The experiences of our members are incredibly important to this—who better to talk about how smell affects us than someone who has lived both with and without it? We're also developing partnerships with individuals and organizations who value the senses of smell and taste as much as we do, which will help us to spread our message and further develop our work.
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ABOUT FIFTH SENSE
Fifth Sense exists to provide support and advice to smell and taste-related disorder sufferers, and so that society can understand what it means to suffer impairment of one or both of these senses.
Based in the UK, we support smell and taste disorder sufferers across the world, and are the first charity providing direct support, advice, and a signpost to potential treatment to sufferers of such conditions. Fifth Sense’s strategy for achieving our goals is to address the lack of understanding within society of the role that the senses of smell and taste play in our lives, which is a major reason for the lack of the appreciation of the impact that disorders of these senses can have on sufferers. |
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