Monday, June 18, 2012

We need a simple test for prosopagnosia -- Fine 342 -- bmj.com

This is one of my favorite First person accounts of life with Prosopagnosia. I relish its straightforwardness. It was published in the British Journal of Medicine by a doctor willing to tell his story.


We need a simple test for prosopagnosia -- Fine 342 -- bmj.com: "* Personal View

We need a simple test for prosopagnosia

1. David R Fine, consultant gastroenterologist, Southampton University Hospitals NHS Trust

1. davidrfine@gmail.com

He is a distinguished colleague and I am proud we are on first name terms: had I met him at the conference rather than the airport I would not have walked past. I was embarrassed, so my wife explained my problem, and his reply was unusual: “You must write a review for the BMJ so that others can understand your problem and benefit from your experience. Accounts of disability and how people cope are uplifting and help even those not afflicted.”

I have severe inherited (developmental) prosopagnosia, or face blindness. The term prosopagnosia was coined in 1947, but it has been widely recognised outside the context of brain injury only in the past decade. Its purest form is limited to facial recognition, but I also have problems with inanimate and animate objects and in interpreting facial signs of emotion and sex. I often fail to recognise my children or even my wife.

Prosopagnosia has shaped my life. At every stage I have failed to acknowledge friends and, more distressingly, those in authority. At school I would get lines for not raising my cap to a teacher or be shouted at (and worse) for ignoring a classmate. As a young man I ignored girls whom I had met the night before—not a good mating strategy. As a houseman I knew the patients by their beds; if the nurses moved them I would present the wrong case on the round. I find networking all but impossible, and social situations, from parties to conferences, may cause acute anxiety. Ward parties are the worst because I know other staff members by their uniforms and badges; in party clothes, with different hairstyles, they are strangers to me.

Even worse than ignoring someone you know is recognising someone you don’t. Depending on the circumstances this can be interpreted as rude, deranged, or predatory. I have long learnt to smile politely at people who smile at me but to let them make the first moves in conversation.

How do I function personally and professionally? A look at my life reveals strategies. I have a limited number of friends, many of whom are physically distinctive: I suspect that is because I was able to recognise them at an early stage, allowing acquaintance to develop into friendship. I work in a hospital, so fellow workers are labelled and patients either come to me by appointment with notes, or are in a specific and allotted place. I memorise hair, jewellery, and favourite clothes. I recognise gaits, tics, and voices. The fashion for tattoos and piercings can help, but they are often hidden in daily encounters. Above all I rely on context: a person of a certain type in our corridor is my colleague—but in the supermarket is probably a stranger. Professionally I have limited myself to a small subspecialty, with a couple of hundred colleagues worldwide.

Being diagnosed helped. A friend used the term prosopagnosia in 1996, but only in 2005, when I found Brad Duchaine, then at the institute of cognitive neuroscience at University College London, did I realise how disabled I am. The news that I am “in the bottom 15%” sounded all right, until I realised that Duchaine was referring to the affected population rather than the general population (I’m eight standard deviations away from the mean). I then became a bore, telling everybody about it. Now I try to tell people on first acquaintance and only reinforce it if they say, “I’ve got that too”—most sufferers forget names but recognise friends and family without difficulty. Many people now reintroduce themselves when we meet. One exposes her tattoo, normally only visible in a low cut dress, which raises eyebrows.

Early on I would tell people how I recognised them, until my wife, who has an astonishing memory for faces, cautioned that inevitably I identified their worst features. Now I tell people who are difficult to remember that this is a compliment, because good looks are symmetrical (would that I had known that line as a single man). I have stopped bluffing and waiting for clues to emerge and consequently no longer finish protracted conversations ignorant of my counterpart’s identity.

I have met a few fellow sufferers, including a professor of psychology and an emergency department consultant; both are well adapted but possibly there are others less well adapted whose lives have been scarred more deeply. I have done well enough in life, but I believe that I would have achieved more professionally had I been better able to network. My hope is for a simple test to identify prosopagnosia in childhood (as for colour blindness), so that the next generation of sufferers grows up in a society that understands and recognises our disability. Meanwhile, if you think you may be affected you can check your facial recognition ability at www.faceblind.org.

1 comment:

qatheworld said...

I would like to believe that education would help, but I have to admit I'm extremely reluctant to tell most people I know about my prosopagnosia. The first reaction I inevitably get is disbelief. They flat out don't believe me that I can't recognize them.... maybe "other" people who I don't know very well, but surely I would remember THEM, it's like it's a personal insult. The next stage, they try to trick me to see if it's true :P. The worst question all my life to be asked is, "who is this" (referring to a picture). It's much worse with real life people. Real life is easier though because voices are very helpful to me, plus other contextual clues and hair/clothes, also it is hard for met to recognize people from photos unless there are few matching options (though it's a start of course).