The hidden disability

Many people around the world will on Tuesday celebrate the feast of St Valentine with flowers, chocolates and gifts. What many may not know is that the third century martyr is also the patron saint of people with epilepsy. Cynthia Busuttil takes a look at the condition.

More than 2,900 Maltese people are estimated to suffer from epilepsy, a neurological condition that makes them susceptible to seizures and that affects about one per cent of the population.

Epilepsy is a hidden disability and many people do not know that a person has the condition unless s/he tells them or has a seizure in their presence.

Witnessing a seizure might be a frightening experience for many, and this is mainly attributed to the lack of information about the condition.

Such lack of knowledge is present despite the fact that epilepsy has been recognised medically for over 2,000 years, Mario Dimech, president of the Caritas (Malta) Epilepsy Association said. He pointed out that the condition is also mentioned in the Bible, in the form of the young boy who was thought to have been possessed by the devil.

"Up to about 30 years ago very little was known about epilepsy, and it is still very evident that there are many people who know nothing about the condition," he said.

Moreover, there is a stigma surrounding the condition, something that is present not only in Malta but also evident in other countries.

"More than with other disabilities, people know nothing about epilepsy, and when they find out that a person has it, or someone has a seizure in front of them, their immediate reaction is fear."

This leads to discrimination, especially when it comes to looking for employment. Association secretary Victoria Dimech said the vast majority of people would rather not say they have epilepsy during a job interview.

That is where the association comes in, Ms Dimech explained. Its major role is to raise awareness about the condition, apart from helping people with epilepsy cope with it.

"When it was set up in 1996, the association's aim was to serve as a support group and to give information to the people with epilepsy and their families. In 2000, we became part of the International Bureau of Epilepsy.

"It is the ignorance about the condition that leads to fear. We need to bring it out in the open. We cannot continue hiding this condition. The more you hide it, the more you give the impression there is something to hide," she said.

She mentioned a recent case of the mother of a boy with epilepsy who was being pressured by other parents to put her son in a special school because he was disrupting the rest of the class.

"When a child has a seizure, it will obviously be a shock to the other children. But if the teacher is informed beforehand, and tells the other children what to expect, they start getting used to it, and in time start accepting it.

"Before the association was set up, people with epilepsy did not have anybody to turn to, except their neurologist.

"At least, nowadays, people who come face to face with this trauma can phone in and speak to a lay person, who understands them and can give them everyday life advice," Ms Dimech said.

But the stigma is so overbearing that many people do not want to reveal their identity, even to the association, and prefer to speak on the phone. "The burden of the stigma is much bigger than the condition itself."

She pointed out that it usually takes a long time for a person with epilepsy to find the appropriate medicine and optimal dosage, especially since every case of epilepsy is considered unique.

Psychological help is important, she said, and the association would very much like to offer a multidisciplinary approach to the problem.

"Ideally, we would have a team, made up of psychologists, social workers and doctors. Unfortunately, because we are a 100 per cent voluntary association, we do not have the funds to employ these people, but we do refer people with epilepsy and their families to those who can help. The association is there as a reference point."

As part of its attempts to raise awareness, the association will be holding a national conference on epilepsy next Saturday.

Types of epilepsy

Tonic-clonic seizures - the most recognised type of epileptic seizure, this is when the person goes stiff, falls to the ground, his limbs start jerking, and then becomes still again before regaining consciousness. The whole seizure usually lasts a minute or two.

Absence seizures - although the person can appear to be day-dreaming or staring into space for a few seconds, he is momentarily unconscious and therefore totally unaware of what is happening around him. Absence seizures commonly begin in childhood, and while some grow out of their epilepsy, others may go on to experience other types of seizure.

Myoclonic seizures - these seizures are caused by a sudden contraction of the muscles, and while they can affect the whole body they are usually restricted to one or both arms and sometimes the head. The person is not conscious during the seizure, but since the seizures are so brief, the person appears to remain fully conscious.

Tonic and atonic seizures - tonic seizures result in the contraction of all the muscles, during which the body stiffens and the person will fall if he is not supported. In atonic seizures all muscle tone is lost and the person simply drops to the ground.

Partial seizures - these are a result of abnormal activity in only a part of the brain and so are associated with brief abnormal movements affecting just parts of the body such as arms, legs or face, and may be preceded by an aura or tingling sensation.

The medical perspective

Epilepsy is a condition where the nerve cells in the brain do not work as well as they should and the brain sends more signals than it should, Janet Mifsud, a senior lecturer at the university's Clinical Pharmacology and Therapeutics Department, explained.

"The symptoms in the body depend on which part of the brain is affected, and depending on the affected area, the person tends to lose control of his movements," she said.

The most severe seizures are tonic-clonic seizures, during which the whole brain is affected. During such a seizure the person tenses up and starts shaking. He might also start foaming at the mouth and lose control of his bladder and bowels. Over 70 per cent of seizures can be controlled through medicines, which means that 70 per cent of people with epilepsy can be seizure-free when they take their medication.

Dr Mifsud stressed the importance of telling at least one friend about one's condition. Unfortunately, the parents sometimes neither tell the school nor other family members if their child suffers from epilepsy.

"The children start to feel that there is something wrong with them, and when they grow up this 'big secret' keeps them from fitting in. Keeping it a secret adds on to the stigma," she said.

How to react

What should a person do when someone is having a fit? The answer is "nothing".

Do not try to hold him because you will do more harm than good. He will come to on his own, even if this might take some time because after a fit a person is likely to feel confused.

If he falls to the ground, try to turn him on his side so that he can breathe properly, and make sure that he does not have anything dangerous in his hands.

But do not try to remove any dangerous objects from the person's hands. If one uses force, the likelihood is that the person will also use force, and can harm you or himself. Instead, hold the object with him.

Although some people fear that a person having such a seizure might bite his/her tongue it is important never to put anything in the mouth.

Nothing can be done to reduce the duration of the seizure.

Living with epilepsy

Paul (not his real name) has had epilepsy for more than 40 years after being diagnosed when he was a 10-year-old boy. At the time, he recalls, there was limited information about the condition.

"The doctors told us very little, maybe because there was very little information available even to them," he said. The little doctors used to tell people with epilepsy was mostly related to what they could and could not do.

"They used to tell me that because of my condition I could not climb ladders, drive, swim on my own or use certain machinery which could be dangerous. This led to me keeping back from doing certain things and I had to depend on other people. Nowadays, if I need to do some maintenance work around the house, it comes easy for me to say that I am not capable. But many times this is simply an excuse and over the years I have learnt that if I take on a challenge, I can manage," he said.

He pointed out that if parents are overprotective the children tend to grow up very dependent and emphasised that it is imperative for children to be allowed to live as much as possible like other children.

"When I was young, I used to believe that everything would pass when I got older, but this never happened. The condition never went away," he said.

The inability to do certain things has had a strong effect on Paul's life. He especially mentions driving.

"It is against the law for people with epilepsy to drive unless they have been seizure-free for one year. However, I agree with this to a certain extent, because I could be involved in an accident and injure somebody else. On the other hand, I am a firm believer that accidents happen, and you do not necessarily have to have epilepsy to be a danger to yourself and others."

Another blow was when he went to buy life insurance cover and the cost went up when he said he had epilepsy. "Does this mean that if something happens to me it would definitely have been caused by epilepsy?"

Something that has also affected his life is the fact that when he was young he did not know anyone who had the same condition.

"I was very withdrawn and it was more difficult for me to make friends and open up to them," he said, adding that many people do not want to show they have the condition.

National conference

A national conference will be held by the Caritas Malta Epilepsy Association next Saturday. The conference, at the New Dolmen Hotel, will analyse the social impact of epilepsy.

Further details about the conference can be obtained from the association on 2143 6442 or via e-mail at zenit@onvol.net.

Famous people who had it

Alfred Lord Tennyson - poet
Alfred Nobel - scientist
Agatha Christie - author
Charles Dickens - author
Danny Glover - actor
Julius Caesar - Roman emperor

Napoleon Bonaparte - French emperor
Neil Young - singer/songwriter
Peter Tchaikovsky - composer
Sir Isaac Newton - scientist
Socrates - philosopher