Sleep experts warn about dangers of narcolepsy


21-09-2001

Doctors need to wake up to the potentially deadly sleeping disorder of narcolepsy, experts warned yesterday (Thursday).

Thousands of people could be sufferers without realising and it's not being properly diagnosed.



The condition, which sends sufferers to sleep without warning, could be affecting more than 20,000 people in the UK - but only around 2,500 cases are being treated.



Experts say narcolepsy can endanger lives - especially for drivers or those using machinery - and devastate family life.



The stark warnings came during the British Sleep Society annual conference at Cambridge University's Robinson College.



Leading sleep doctor John Shneerson said it's a condition which is worryingly underdiagnosed in the UK.



'Narcolepsy is a condition where the sleep switch in the brain is turned too far on,' he said.



'People with narcolepsy have a deficiency of the brain chemical orexin which controls the sleep switch. Cells that produce the chemical are missing. The question is when do they go missing? Does the body turn against the cell, or is it triggered by some other factor?



'At night you keep waking up and in the day time you keep falling alseep. I had a patient who sat her A levels and was asleep through the whole exam and got zero.'



Dr Shneerson, Director of the Sleep Centre at Papworth Hospital, Cambs, said there were three main features of the condition: falling asleep without warning, attacks of cataplexy - a sudden loss of muscle strength caused by extreme emotion or laughter leaving sufferers paralysed but still awake, and waking dreams.



'Eighty per cent of people with the condition aren't diganosed. It usually comes on between the ages of 15 and 30 and it's a life-long condition,' he said.



'It's also characterised by attacks of being paralysed at night, vivid dreams of flying and swooping, coloured vision, noises and very vivid, lifelike dreams.



'It can be very dangerous. People can have accidents, if you have a cataplexy while crossing the road, you can be killed.



'A sleep attack with young children at home can leave them vulnerable.



'There is also a higher divorce rate in people with narcolepsy and it can be difficult to form relationships. If you go out with a narcoleptic, they'll be asleep for half the evening.



'If you are drinking in a bar and someone tells a joke the narcoleptic can drop their glass and fall to the floor. It causes a great loss of self esteem. People lose their social contact because they're embarrassed to go out.



'People try to control their emotions, try not to laugh, try not to get involved in things. A lot of people think it's their age. They often adapt to it, they think other people feel sleepy too or that they just need a bit more sleep than others. People rationalise or put up with it.



'Sleep problems have been under-estimated in the past. GPs are becoming more aware now, but there's still a lack of specialist centres which can assess and treat patients.



'The worst case scenario is that people don't achieve their educational potential. They can't retain or obtain a job, or form relationships. They become socially isolated, often with low self esteem and depression, they're at risk of accidents which are often serious because of the cataplexy, and there's a knock on effect with the lack of employment meaning they've got no money.



'It can have a devastating effect on your life and the relief when they say something and talk to someone who understands what's going on and can help is dramatic.'



But Dr Shneerson said there was hope for sufferers and they can be treated. A new drug called modafinil is currently being used to stabilise patients' wakefulness.



'It's treatable and people can also adapt their lifestyle to take into account the possibility of attacks and by not putting themselves in dangerous situations. What's needed is better awareness.'



By Stuart Leithes