Anosmia: Norfolk clinic helps those without a sense of smell
Imagine a world where you have no sense of smell.
By Martin Barber BBC News, Norfolk
Sarah Page just wants to sense the comforting smell of her boyfriend Andy and other everyday pleasuresImagine a world where you have no sense of smell.
The aromas of a morning coffee, fresh flowers, clean washing, newly baked bread or perhaps the comforting scent of loved ones – all gone.
That world is very real to an estimated three million people in the UK who spend their lives with no sense of smell – a condition known as anosmia.
It can lead to life-threatening situations, isolation, depression and a loss of interest in food as 80% of what we taste comes from smell. The common cold is one of a number of causes.
Sarah Page, 19, a photographic student from Peterborough, has lived with the condition since she was five. Years later, being unable to smell could have killed her.
‘I’m missing out’
“My mum had a gas cooker. I hit one of the knobs and it started to let gas into the kitchen. When Mum came home she said ‘I can smell gas’ and started to run around the house opening the windows. I could have died,” she said.
But despite a brush with death, safety is not what concerns her most about her condition.
FIFTH SENSE
Duncan Boak, 30, from Leeds, has lived with anosmia for seven years following a severe head injury suffered in a fall.
He feels he is no longer “fully engaged with the world” and that he is “watching life through a pane of glass”.
To help other people with the condition, Mr Boak, a keen amateur cook, founded Fifth Sense, the UK’s first anosmia support group.
“Losing my sense of smell never stopped me from enjoying food – I’ve just had to deal with the fact my experience of food is no longer what it was,” he said.
“I’ve learned to use other stimuli beyond flavour to make food enjoyable, and have adapted my own cooking and food preparation techniques.”
Mr Boak plans to indulge his passion for food by developing new cooking techniques to help other anosmic patients still appreciate meals.
“To be honest I’m not so fussed about the safety side of things, it’s the personal side where I feel I’m missing out,” she said.
“My friends talk about wearing their boyfriend’s clothes and being able to smell them, but I’ve never been able to experience that. When I see perfumes in the shops I think ‘I want to smell that’, but I just can’t.
“I don’t think people realise how much living without a sense of smell can impact at such a personal level on your life.”
Perhaps surprisingly, she also wants to know the pungent smell of bad things.
“I’d love to be able to smell the really crap things to be quite honest,” she said.
“When somebody farts and people go ‘Oh that stinks’ – I want to be able to smell that, understand why that’s a bad smell and join in with that conversation.”
Miss Page is now a patient of Carl Philpott, an ear, nose and throat consultant surgeon who runs the UK’s only NHS Smell and Taste Clinic at the James Paget University Hospital in Gorleston, near Great Yarmouth.
The centre has been running for 18 months and has so far treated more than 100 patients from around the UK.
“As a trainee doctor I quickly realised not only was the level of knowledge in this field lacking, but in this country there wasn’t much interest in dealing with it as a problem if you lose your sense of smell,” Mr Philpott said.
“It was always my first goal upon becoming a consultant to establish a special clinic that caters for the needs of these patients.”
After graduating from Leicester’s University Medical School, Mr Philpott studied further in Canada and Europe, learning advanced skills in endoscopic sinus surgery and techniques for assessing and researching the sense of smell.
“The key problem in this country is that we haven’t had a dedicated smell and taste clinic until this point,” he said.
“If you go to the States there is a smell and taste clinic in every other state and in Europe probably most countries have a dedicated centre for this problem.
“What we’re missing here is the whole referral pathway and people being in tune with the fact you can refer on and see if there’s anything to be done about it.”
Anosmia can be present from birth, or it can be caused by chronic sinusitis, head trauma from an accident or simply the common cold.
TYPES OF SMELL LOSS
Smell loss can be split into conductive smell loss and sensory neural smell loss.
Conductive loss is about problems with odours getting to the top of the nose from swelling blockage in the nose itself, or injury.
Sensory neural smell loss is a problem with the signal being generated from the smell receptors at the top of the nose and the front of the brain where people receive the signal.
Research has shown that 50% of patients with it are depressed.
Many also live with a major loss of taste as about 80% of what is savoured during meals comes from the sense of smell.
To help patients regain their sense of smell, Mr Philpott uses a neuronavigation system known as bilateral computer-aided endoscopic sinus surgery (BiCASS). It overlays the image of a CT scan over the patient’s face, showing the blocked sinuses, as a guide to allow more extensive surgery.
Studies have shown this more invasive technique may reduce the need for further surgery to just 2% of patients, compared to those who undergo a standard polypectomy, of which 20% require further surgery within five years.
“I realised that if you open all the sinuses and clear them out to remove the burden of inflammation, but also provide access for medications to get in there properly afterwards, you can control the problem really well, which helps an improvement in the sense of smell,” said Mr Philpott.
“The simple polypectomy is cheaper, but some patients require further surgery within five years and our experience is that their quality of life is affected, especially with regards to smell.”
Mr Philpott added: “We need to research more in terms of treatment and raise awareness among all members of the medical profession that this is something we can deal with.
“We can’t effectively treat or cure all cases by any means, it would be a lie to say that, but there are a lot of patients out there that are going untreated and we could do a lot to improve that.”
Miss Page is scheduled for an operation at the Smell and Taste Clinic in the next few months.
“I’m trying not to get my hopes up. He [Mr Philpott] says it might not bring back my sense of smell – but it’s worth a shot.”
