Samantha Janes was a week away from starting a PGCE course at the University of Reading last September when she was diagnosed with epilepsy. The doctor's last words as she left hospital were: "Don't worry, this won't change your life in any way." She told the university about her condition and continued packing. The next day, the university doctor phoned to tell her that because of her epilepsy she would not be admitted to the course. This was even though her seizures only occurred during sleep,and doctors were confident medication would control her condition - both factors which, according to the Government's Fitness to Teach occupational health guidelines, should have allowed her to pursue her ambition to become a secondary music teacher. Samantha is now considering applying for another course this September.
"Few conditions are as misunderstood," says Margaret Thomas of the National Society for Epilepsy (NSE). "People find it frightening, so they shut themselves off from the facts. There is a great deal of confusion and ignorance." A recent NSEsurvey revealed that nearly 5 per cent of people still believe the condition is caused by demonic possession.
In fact, epilepsy is a neurological condition. Seizures are the result of a sudden interruption to the brain's electro-chemical activity. Everyone's brain has the potential to suffer this kind of blip - and one in 20 of us will experience a seizure at some time. The possible causes are many and varied. Seizures can be the result of slight damage to brain tissue - the legacy of a tumour, a blow to the head, or an infection such as meningitis. They may be triggered by drugs or alcohol, by menstruation or hormonal changes, by loud noises or by bright, flashing lights - though this is nowhere near as common as is popularly believed. In many cases the cause remains a mystery.
Anyone who has two or more seizures may be diagnosed with epilepsy. Again the statistics are surprising - about 1 per cent of us will develop the condition. But epilepsy often goes unrecognised. Most "sufferers" no longer have seizures because medication is effective in about 80 per cent of cases. And not all seizures involve falling to the ground and writhing uncontrollably. In many cases symptoms are so mild that they go unnoticed, even by those sitting only a few feet away.
Until recently seizures came in two sizes: petit mal and grand mal. Now the full range of symptoms is more accurately defined - but it is still helpful to divide seizures into two basic categories. Partial seizures involve impairment, not loss, of consciousness. They may induce nothing more than a sensation similar to pins and needles or a single limb twitching involuntarily. Generalised seizures involve the whole brain and loss of consciousness. It is these that can produce the convulsive "fit"- falling to the floor with stiff, jerky limbs - which usually last a couple of minutes. But sometimes a generalised seizure will cause only a fleeting absence, a lapse in consciousness lasting a few seconds. These absence seizures particularly affect children, and it is not unusual for teachers to find that pupils they think of as serial day-dreamers may have this form of epilepsy. Indeed, given that epilepsy of any kind is most commonly diagnosed before the age of 10, the NSE is keen to brief teachers on how to deal with seizures at school.
But when it is the teacher who is having the seizure, it is important that others in the classroom also know how to react. Gay Mortimer is a primary teacher from Cheshire with epilepsy. While some teachers keep their epilepsy secret - afraid of possible prejudice - Mrs Mortimer makes a point of ensuring that her colleagues are aware of the condition. "It's important to be open and honest with pupils and colleagues - they need to know. The first time I had a seizure in front of a class, one of the pupils quickly and quietly went into the next classroom and said, 'Mrs Mortimer's fallen over. I think she needs some help'. They were very calm, no one was distressed."
Mrs Mortimer was diagnosed 22 years ago, during her teacher training. Unlike Ms Janes, she found her course tutors "incredibly" supportive. "They told me I could still have a career - and they were right. In 20 years I've had only one experience of discrimination."
There are, of course, important health and safety issues for teachers with epilepsy, especially for those who work in laboratories or design technology workshops. Government guidelines suggest that the right to hold a driving licence is a sensible benchmark of fitness to take charge of a class - that means being seizure-free for a year. In reality, there is some flexibility. "It's mostly down to common sense," says Mrs Mortimer. "If I'm teaching PE, I make sure the door is open. And I wouldn't take children out of school on my own - but you can work round these things."
This is the attitude of most people with epilepsy - life continues as normal, but with some precautions. The less controlled the epilepsy, the greater the adjustments: taking showers instead of baths, fitting safety glass in doors and low windows, minimising the number of sharp corners or edges you could fall against.
Understanding of epilepsy may be improving - scientifically and socially - but Margaret Thomas concedes that it's a "long, slow haul", particularly when it comes to changing attitudes rooted in a brutal past. "It's less than 100 years since epilepsy sufferers were deemed insane and thrown in the madhouse. Even today people come to our care centre who ask if it's safe to leave their car unattended, for example, because of the patients."
In the workplace, at least, epilepsy's inclusion under the Disability Act has gone some way to reducing instances of unfair treatment. Even so, in a survey of NSE members last year, 45 per cent said they had experienced prejudice in their careers. It's a statistic Samantha Janes can relate to. "I was made to feel like a four-headed freak, not fit to stand in front of a class. Apparently, the university can apply the government guidelines at its own discretion. But where there's room for discretion, there is room for discrimination."
British Epilepsy Association helpline 0808 800 5050; email: email@example.com; website: www.epilepsy.org.ukNational Society for Epilepsy helpline 01494 601400; website: www.epilepsynse.org.uk The NSE can arrange school visits, and produces a range of publications. Tel: 01494 601300The National Centre for Young People with Epilepsy runs courses for teachers and other education professionals. Tel: 01342 832243; website: www.ncype.org.uk
EPILEPSY: THE FACTS
* Most seizures will stop of their own accord. They may appear frightening, but there is usually no need to call for medical help.
* Do not attempt to restrain movement. Try to place something soft under the head to prevent injuries, and remove any sharp items.
* Prevent people from crowding round, but only move the person if he or she is in danger - for example, near the top of some steps.
* Never put anything in a sufferer's mouth.
* If one seizure immediately follows another, or if a seizure lasts more than five minutes, it may be an indication of a condition called status epilepticus - call an ambulance.
* When the seizure has finished, place the person in the recovery position and ensure nothing is blocking his or her throat.
* People with epilepsy are usually unaware of what happens to them during a seizure. Jotting down your observations could provide vital information for a GP.