How would it feel if you couldn't recognise your own family?
That's the experience of some sufferers of face blindness, which is as common as autism or Alzheimer's. Now the search is on for a cure, as Graham Mole reports
Tuesday 21 August 2012
Imagine waking up and not knowing who's sharing your bed. Imagine collecting a child from school – but picking up the wrong one. Or being a mother and not being recognised by your own child. These are all the problems faced by around a million people in the UK today. Among the famous sufferers are Duncan Bannatyne of Dragons' Den, playwright Tom Stoppard and Jane Goodall.
It's called face blindness – or prosopagnosia. It affects more people than Alzheimer's and autism and, just like dyslexia before it, it's a hidden handicap that gets people in trouble every day.
But a new national centre to study the condition has been established and pressure is building up on the NHS to recognise the condition and to get the public to understand it and sympathise with the sufferers. There's also pressure for children to be tested because, after an experiment in Australia there may be hope of treatment. There, in Sydney, an eight-year-old boy identified only as "AL" was put through a long series of tests using grey scale photographs to retrain his brain. For the first time psychologists here are hoping there might finally be a solution. In a letter to the British Medical Journal Dr David Fine, himself a sufferer, revealed the torment of his early life. He wrote that the condition "has shaped my life". He added: "I often fail to recognise my children or even my wife." The doctor, from Southampton, is calling for a simple children's test "so that the next generation of sufferers grows up in a society that understands and recognises our disability".
Leading researcher Dr Sarah Bate, of Bournemouth University, also wants to develop a way of training sufferers with the condition. She's just got funding to start a new national centre to study prosopagnosia and she's already been contacted by 700 individuals offering to be tested. A number of parents who think their children might be sufferers have been in touch and now a joint project with the University of St Andrews is under way – the first attempt to improve these children's skills at face processing.
Bate has found that part of the problem is the British tradition of wearing school uniforms. She says: "We had one boy of five and the only friend he could make – simply because her face was different – was a Chinese girl."
In the United States, where they don't use school uniforms, there was no such problem. And some children, she found, couldn't even recognise their own parents. One teacher with the condition only coped by the use of seating plans. But when the pupils played up by swapping seats he got depressed and got a post at the Open University corresponding by email.
Dr Bate says: "We're wondering whether, if we could test children at, say, seven, there might be a chance that some training could help. It's going to be an uphill battle but we do need those tests – just as they have them for dyslexia."
A classic case is former IT teacher Jo Livingston, 67, from Bexley. She suffers from the condition and, having retired, is now touring schools and giving talks to make people aware of the problem. Even now, she only recognises her husband "because he has a beard and talks a lot". They met in their 20s as members of a climbing club.
She says: "When you're climbing you always wear the same clothes and if someone wears a red anorak they'll be in a red anorak next week. So I married the one in the red anorak because that was the one I was looking for. Now I do the talks so that people can know about it – so they can have that 'that's me' moment."
Livingston has found instances where a woman could only be sure it was her baby in hospital if it was the one with a cuddly toy in the cot. Another woman said she was at a festival, looking for someone she'd planned to meet and only later found she'd been chatting to Ronan Keating. And a Hollywood engineer couldn't even recognise Brad Pitt when they shared a lift.
"Television's very difficult because characters change clothes and hairstyles and sometimes the plot hinges on that," Livingston says. "You see two young blond women and you think they're the same person until they appear on screen together and then you mentally have to rewrite the entire plot. It's quite exhausting."
Another sufferer is social worker Nerina Parr, 44, from Brighton. She says: "It's the new dyslexia... nobody could explain what it was and half the time they didn't have any sympathy with it anyway. It's always getting me into trouble. For instance, my partner changed the picture of us on my bedside and I got really jealous and demanded to know who this new person was... then there's the nightmare of walking into work meetings and not knowing who the people are – even though you work with them."
Anna Cady, a 60-year-old artist from Winchester, thought at one stage that she had Alzheimer's or dementia. "So when I found out what it was it was a tremendous relief. Then again, I did some tests on the internet and ended up sobbing my eyes out because I couldn't even tell when they changed the faces. The awful thing is that you dread going outside because you might offend someone by not recognising them. When someone says 'hello, Anna' your heart sinks because you just hope you aren't going to offend someone."
If you think you have face blindness and would like to be part of the research you can register at prosopagnosiaresearch.org
Face blindness: Causes and cures
Prosopagnosia or face blindness can be caused by stroke or brain injury, but some people are born with it or develop it despite having no other signs of brain impairment. Recent research suggests it may sometimes be genetic.
It is thought to be caused by abnormality of or damage to a part of the brain that controls memory and facial perception.
In extreme cases, those with the condition are unable to recognise their own faces or tell the difference between a face and an object.
Treatment focuses on teaching coping strategies and the use of a variety of prompts and cues to recognise people by other means. But research is under way and it is hoped an effective prevention or cure may be found.
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