What do Prince, Neil Young, Agatha Christie, Joan of Arc, Vincent Van Gogh, Susan Boyle, Charles Dickens and Julius Caesar have in common?

They all had, or have, epilepsy. And so do an estimated 50 million people across the world today, including over 4,600 in the Maltese Islands. Despite this, many of us are still relatively ignorant about epilepsy, a condition with no known cause or easy cure and which can affect both children and adults.

11 February, International Epilepsy Day, is an opportunity to raise awareness about epilepsy: what it is, how it can be treated and what is required to bring treatment to all those who need it, and The Malta Independent on Sunday met with Frank Portelli, President of the Caritas Malta Epilepsy Association, to learn more about the condition and the launch of a practical toolkit this year.

 

What is Epilepsy?

First and foremost, epilepsy is the most common chronic neurological condition; it makes no distinction between race or social background and can affect any person and at any stage in their life. Epilepsy can cause people to experience seizures or convulsions, this is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. People are diagnosed with epilepsy when they have had two or more seizures, although it is important to note that someone with epilepsy can have more than one type of seizure

Seizures can take many different forms and can affect different people in different ways. In a major grand mal seizure – also known as a generalised tonic-clonic seizure – the individual has a loss of consciousness and may have jerking movements. Such a seizure may come as a shock to onlookers who have never experienced it before. Although this is one of the more common types of seizures, there any around 40 different types, some of which – such as focal or partial seizures – affect just one part of the brain and may even be difficult to identify. They can last a few seconds, during which the person lacks awareness, while in others the person can become confused.

In Malta, unfortunately, there tends to be a large stigma about epilepsy: people lack awareness and understanding. The old  name in Maltese for the condition is ‘tal-qamar’ –which is often more of a barrier than the condition itself and should not be used. It has been replaced by the word epilessija in Maltese.

 

Can epilepsy be controlled?

With the correct medication, some 75 per cent of people with epilepsy can become seizure-free; the remaining 25 per cent will still have seizures, despite maximising the use of available medication.

Despite ongoing research, it is still not fully understood why some people have epilepsy and not others. However, it is known that the condition can be due to head trauma or injury, or the after-effect of a tumour or stroke, but in others it is idiopathic (ie the cause remains unknown).  To complicate matters further, various triggers, including stress, fatigue, alcohol, drugs or flashing lights, can lead to a seizure.

In view of the fact that not many people are aware of the condition, and the varying types of seizures and its implications, many people are afraid to try and help a person having a seizure – and some mistakenly think the individual is intoxicated. There is nothing that can be done to shorten the duration of a seizure, but you can still help in several ways.

 

What is the Epilepsy Toolkit?

This year, with the support of the Commission for the Rights of People with Disability – CRPD, the Caritas Malta Epilepsy Association is launching a toolkit. This project has involved a wide range of professionals in order to develop a  Maltese resource that acts as a point of information and explanation to those who have just been diagnosed  and to carers, teachers and families looking for further information. It will be available in hospitals and to anyone who requests it and there has also been work regarding the training of workforces and educational establishments on how to support those with epilepsy.

 

What should you do if someone has a seizure?

Caritas Malta Epilepsy Association has come up with 10 simple things to do when someone has a convulsive seizure.

 

1. Stay calm.

2. Look around –  is the person in a dangerous place?  If not, then don’t move them. Move objects such as furniture away from them.

3. Note the time the seizure began.

4. Stay with the person. If he/she doesn’t collapse but seems blank or confused, gently guide them away from any danger. Speak quietly and calmly.

5. Cushion their head with something soft if they have collapsed on the ground.

6. Don’t hold them down.

7. Don’t put anything in their mouth.

8. Check the time again. If a convulsive (shaking) seizure does not stop after five minutes, call for an ambulance (dial 112).

9. After the seizure has stopped, put the person into the recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airways such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance.

10. Stay with the person until he/she is fully recovered.

 

For more information about the Caritas Malta Epilepsy Association visit

https://www.caritasmalta.org/services/epilepsy / or email [email protected]