Epilepsy sufferers in Malta facing ‘added problems’

For Mario Dimech growing up with epilepsy meant lagging behind at school before being diagnosed, repeating a year and becoming an introvert when he himself could not understand his condition.

His overprotective mother used to discourage him from trying new things, worried he would hurt himself. It was only when he met his wife, Victoria, that he was able to understand his condition and rediscover himself.

“With Victoria, whenever I had a seizure, we would sit down and talk about what happened. Like that I could understand what was going on,” the 58-year-old said.

Mr Dimech was first diagnosed with epilepsy – a chronic neurological disorder characterised by seizures – at 11, after waking up at night on two occasions having bitten his tongue.

“However, I think my epilepsy started earlier when I was in primary school as my teacher always used to tell me I had my head in the clouds,” he said. He explained this could possibly be due to absence seizures, where a person would appear to be staring into space.

Undiagnosed, children with epilepsy tended to lag behind at school because teachers thought they would not be paying attention, his wife said.

After starting secondary school, things started looking up as treatment helped to reduce the number of seizures Mr Dimech suffered. Now medications have reduced these from 120 to 33 a year.

“When I found out I had the condition I crawled into my shell as I used to worry I would get a seizure in front of the other children and they wouldn’t remain friends with me,” he said.

Apart from that, his parents’ concern that he would hurt himself used to restrict his activities.

As member states marked European Epilepsy Day yesterday, Caritas Malta Epilepsy Association said sufferers in Malta had added problems to face that were not only related to the stigma of the condition.

Mr and Mrs Dimech, who are president and secretary of the association respectively, said misconceptions about the condition remained and children suffered at school when teachers did not know how to cope with a seizure.

As teens, for example, people with epilepsy were thrown out of clubs because security assumed they were drug addicts, Mrs Dimech explained, adding this had a snowball effect on friends, who would not want to be seen with someone who was perceived as a drug abuser.

At work, many people with epilepsy still chose not to tell their boss about their condition, fearing they may have problems.

“Unfortunately, many employers are scared to recruit people with epilepsy,” Mrs Dimech said, adding there could be a number of reasons for this. Some claimed it was because people with epilepsy took a lot of sick leave, others because they thought people with epilepsy would not reach their full potential. The excuses were various and all unfounded, she said.

Another drawback is that video-telemetry, an essential tool in the diagnosis of the condition, is as yet unavailable and the Mater Dei Hospital machine remained idle for some reason or other, Mrs Dimech said.

On top of that, epilepsy medications were frequently out of stock.

“People with epilepsy cannot stay without their medication,” she said, adding these could not be bought from private pharmacies and, therefore, sufferers relied on the state’s system to keep their seizures in check.

However, in spite of such problems, the stigma remains a central problem and raising awareness continues to be the group’s main aim.

Facts and figures

• Six million people suffer from epilepsy in Europe, with some 4,000 people in Malta alone.
• 300,000 people are diagnosed with epilepsy in Europe every year.
• 40 per cent of children with epilepsy have problems in school.
• Five per cent of people will have at least one seizure in their lifetime.
• 70 per cent of people will become seizure free with appropriate treatment.
• 40 per cent of people with epilepsy in Europe receive adequate treatment.

What is a seizure?

A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. They can range from sudden jerking movements to a simple stare.

Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed while others are totally disabling.

It does not mean all people who have one seizure will suffer another one, although about half of the people who have one seizure will usually suffer another within six months.

How to help someone who is having a seizure:

Many seizure types – such as generalised absence seizures, which involve relatively brief episodes of unresponsiveness – do not require any specific first aid measures. For other forms of seizures, follow these simple steps, remain calm and use your common sense:

Make sure to remove objects that may harm the person if he struck it.

Take note of the length of the seizure.

Make the person as comfortable as possible.

Do not hold the person down.

Do not put anything in the person’s mouth (contrary to popular belief, a person having a seizure is incapable of swallowing their tongue).

Do not give the person water, pills or food until fully alert.

If the seizure continues for longer than five minutes, call the emergency number 112.

After the seizure, the person should be placed on his left side. Keep in mind there is a small risk of post-seizure vomiting, before the person is fully alert. Therefore, the person’s head should be turned so that any vomit will drain out of the mouth without being inhaled. Stay with the person until he recovers (five to 20 minutes).