Comment: It is important for people to understand epilepsy

First published in Opinion

Let’s put epilepsy back on the radar. At a time of large families, high infant death rates and frequent birth damage, epilepsy was much commoner than it is today.

Most people born immediately after the war will remember some children at school who suffered from what was, always, a somewhat scary affliction.

Today, with much smaller families, improved general health and very low levels of birth injury to children, epilepsy is much less likely to be witnessed and it has, to an extent, slipped off the agenda However, it remains an important issue and increasing-ly is likely to affect older people as well as children, as a result of health conditions of middle and later life. It remains of great importance, not least for sufferers and their families.

Today our ambition is much greater than in the past, namely for those suffering from epilepsy to live as full a life as everybody else. To do this we need to ensure that in everyday life there is a good understanding of what epilepsy is, how it should be best managed by patients and their families, and how it is responded to by friends and bystanders.

We have known about epilepsy since biblical times. It occurs when, for a variety of reasons, brain cells fire off in an uncoordinated way, stimulating the nerves responsible for violent movements of muscle groups.

The ancient Greek philosopher Socrates suffered from it and, according to Gospel accounts, Jesus cured people with epilepsy. In ancient times, those suffering epileptic seizures were said to be possessed by demons.

In most cultures at one time, people with the condition have been imprisoned, shunned and discriminated against.

While most people with epilepsy enjoy full and active lives, around one third do not respond to medication and continue to experience seizures.

Though the worst examples of stigma have been consigned to the history books, epilepsy is misunderstood still by many people.

A nationwide poll of people with epilepsy found that two thirds worry what members of the public would say or do if they had a seizure. A third admit this concern led to anxiety about whether to leave the house, while just over half believed discrimination was widespread.

If you see someone having a seizure, whether it is caused by epilepsy or not, there are some simple things you can do to help: l move them away from anything that could cause injury, such as a busy road or hot cooker; l cushion their head if they're on the ground; l loosen any tight clothing around their neck, such as a collar or tie, to aid breathing; l when their convulsions stop, turn them so that they're lying on their side; l stay with them and talk to them calmly until they have recovered; l note the time the seizure starts and finishes.

As the person is coming round, they may be confused, so try to comfort and reassure them. You don’t necessarily have to call an ambulance because people with epilepsy don’t need to go to hospital every time they have a seizure.

Some people with epilepsy wear an identification bracelet or carry a card to let medical profess-ionals and anyone witnessing a seizure know that they have epilepsy.

However, dial 999 if: l it’s the first time someone has had a seizure; l the seizure lasts for more than five minutes, or; l the person doesn’t regain full consciousness, or has a series of seizures without regaining consciousness.

Talking to other people with experience of epilepsy can help. Young Epilepsy offers information, education and training about epilepsy for young people, their families and the professionals working with them, and help for schools. www.youngepilepsy.org.uk

  • Professor John Ashton, Cumbria’s Director of Public Health

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