“Life is Beautiful”; life is beautiful despite a diagnosis of epilepsy; life is beautiful when enjoyed with family and friends. This is the message that the IBE, International Bureau for Epilepsy (a network of patient organisations) and the ILAE, International League Against Epilepsy (a global organisation of medical professionals with an interest in epilepsy) want to drive home on the occasion of the celebration of the International Epilepsy Day on Monday 12 February 2018.
The first International Epilepsy Day was organized on Monday 9 February 2015. It was thereafter decided to be observed on the second Monday of February every year,
While the IBE, and the ILAE, each of whom has member organisations in more than 100 countries around the world, have organized an international photography competition, the EDYCS Epilepsy Group in Mauritius will mark this event in conjunction with its 20 years of existence.
In a statement to This Week News, Mr Youssouf Noormamode, CSK, President of Edycs said that “for practical reasons we will celebrate epilepsy day on Thursday 15 February 2018 with a workshop at Gymkhanna Port Louis”. This event will be held under a project financed by the National CSR Foundation.
“We will focus mainly on the importance of communication for a better approach to treatment strategies. We will also look into human rights issues for people with epilepsy in the context of Africa Disability Protocol to which Edycs, as a non-governmental organization, has subscribed with a view to empowering patients and creating increased independency despite their disability status. Prizes will be awarded to winners of the national essay competition organized in this context”, he added.
In Rodrigues the Epilepsy Centre, which operates under the aegis of Edycs Mauritius, the event will be marked by a sensitization workshop at its seat at Manique, La Ferme on Monday 12 February 2018 as from 08.30 am. According to Mr Jaabir Cader, Manager of the centre, “it will be an opportunity to discuss about epilepsy and its socio-economic impacts, and possible breakthroughs in treatment and cure strategies”.
The aim of having an international epilepsy day is to provide a platform for those with epilepsy to share experiences and stories; for sensitising people, organizations and governments on the need to encourage epileptic persons to live their life to their fullest potential; to press for appropriate legislations to guarantee their human rights; and to ponder on the urgency of increased investments on IT-aided support and research in epilepsy with a view to securing more appropriate diagnosis, treatment and medication options.
It is a day to reflect upon how people can contribute in joining hands together and pooling resources to bring epilepsy out of the shadows. It is a day dedicated to those who, by their condition, are looked down, stigmatized, discriminated and marginalized. It is a day that aims at bringing hope and comfort to those often sidelined as mental patients.
According to Mr Youssouf Noormamode who is also Vice-chairman of the International Bureau of Epilepsy, Africa Region, it is estimated that some 20,000 people live with epilepsy in Mauritius and Rodrigues. Exact figures cannot be ascertained due to misreporting.
This dreaded condition, which affects one in every 100 people in the world, is often not well understood. Many people associate it with the devil due to the ancient nature of this condition. They believe they have been cursed and possessed by evil spirits. Nothing is more fallacious than such assumptions.
Epilepsy is characterised by recurrent seizures. A seizure occurs when the brain is unable to organize and coordinate messages coming to it from the rest of the body and the spinal cord through nerve fibres. The person experiences bouts of fits and he faints; his body stiffens and his muscles convulse; the whole body jerks.
Most of the time seizures can be controlled successfully through various strategies – medication, psychological and medical counseling, physiotherapy, neurotherapy, massage therapy and social and environmental support, to name but a few. What is difficult to overcome is the stigmatization and discrimination they are often subjected to. That’s the root of most of the problems of epileptic patients.
Facts about epilepsy:
- Epilepsy is not a mental illness; rather a neurological condition, although in certain cases an epilepsy can accompany mental conditions. It has been categorized as a disease in 2014 by the ILAE. This, according to ILAE, constitutes “a very important step forward in ensuring that legislators, public health officials, media people and funders see epilepsy for what it is: a major serious health issue which can destroy lives”. In other words this categorization aims at giving epilepsy the prominence it deserves.
- Epilepsy does not have any spiritual or supernatural cause. By the ancient nature of epilepsy some people believe that epileptic patients are “possessed” by evil spirits and should be treated by invoking mystical powers. This is merely a myth.
- Epilepsy is a physical condition in the same way as arthritis and blindness (arthritis occurs in the joints, epilepsy occurs in the brain).
- It can be triggered by various factors, often by a head injury, an infection in the brain or a stroke or brain haemorrhage; brain tumours or structural abnormalities – brain not developed properly in the womb or damage caused during birth. This is symptomatic type of epilepsy.
- However in 50% of people diagnosed there is no apparent cause. Genetic cause is suspected and thus it is thought to be inherited. This type of epilepsy is known as idiopathic
- In cryptogenic epilepsy, the third type, no cause is found but a structural cause is suspected.
- Epilepsy is not contagious. It cannot be transmitted from one person to another.
- Anyone at any time of their life can develop epilepsy. It is most common under the 20’s (case of seizures in unborn child, which will continue after the baby is born. Some are born with low seizure threshold. Others with physical cause); and over 60’s: because they are more susceptible to stroke and other cardio-vascular problems, and because the brain may be damaged as a result of any of these they may go on to develop epilepsy.
- Epilepsy can simply go away, called spontaneous remission, usually in children reaching puberty. Some children just grow out of their epilepsy, usually by the age of 15 or 16, after which they will no longer have seizures.
- There is no need to worry. Epileptic patients are no different from others. Contrary to common beliefs, they are not dangerous. If you observe somebody having seizures don’t panic, although it may be scary to watch. Most seizures are not medical emergencies; they end up after one minute or two. Let the person recover by himself. Just keep them away from objects that can cause them harm, if possible put something soft under their head. Once the seizure is over, put them in recovery position. If the seizure lasts for more than 5 minutes or should you observe any signs of injury or sickness, seek medical help.
- With appropriate treatment and follow-up most epileptic people may keep their status under check. They may lead a normal life like anyone else; they can go to school, work, practice sports, get married and socialize.
Many famous and well known people have had epilepsy in their lives. Here are some of them:
- Sir Isaac Newton, famous scientist who studied many scientific disciplines and formulated the laws of motion and of gravitation,
- Agatha Christie, English crime fiction writer,
- Charles Dickens, English novelist of the Victorian era,
- Alfred Nobel, Swedish chemist, engineer, innovator, armaments manufacturer and the inventor of dynamite,
- Richard Burton, well known for his distinctive voice and at one time the highest paid Hollywood actor,
- Chanda Gunn, American ice hockey player. She won a bronze medal at the 2006 Winter Olympics.
- Alexander the Great, ancient Macedonian king.
- Theodore Roosevelt, 26th President of the U.S. He was subject to epileptic seizures, but was still a man of courage and strength appreciated by many.
So there’s no need of being scared having epilepsy. People with epilepsy can live to their highest potential provided they get the necessary supportive environment. Each of us, family members, friends, neighbours, colleagues, social organizations, governments, has a role in setting up the necessary framework aimed at targeting our efforts towards helping them to unleash their potential and get more self confidence so as to better manage their condition and remain fully integrated in normal life.
For those seeking help and support, know that there are centres around the world that can bring answers to any queries and apprehensions. In Mauritius there’s an epilepsy centre in Port Louis at 442 Boulevard Rivaltz, under the aegis of EDYCS Epilepsy Group. In Rodrigues the centre is situated at Manique, La Ferme. A variety of specialist support services are available at these centres.
This Week News takes this opportunity to wish all concerned with the subject of epilepsy a fruitful day.