What connects this diverse group of persons: Julius Caesar, Fyodor Dostoevsky, the singer Prince, Susan Boyle and US Chief Justice John Roberts? They have all experienced one of the most misunderstood, maligned and stigmatising medical conditions – epilepsy.
Persons with epilepsy have been unfairly singled out, prosecuted and discriminated by various cultures and societies across the millennia. Persons with epilepsy have been and still are unjustly perceived as being possessed by magic or supernatural power, despite it being so common. It affects around one per cent of the population worldwide, across all ages.
This means that around 4,000 persons in Malta have epilepsy. One cannot stress enough that a person is not ‘epileptic’ or ‘suffers from epilepsy’, since such terms reinforce the stigmatisation.
Medically, we know quite a bit about epilepsy and its causes. It is defined as a tendency to have recurrent seizures (also sometimes called fits), caused by a sudden burst of excess electrical activity in the brain, resulting in a temporary disruption in the normal message passing between brain cells. This disruption may have several causes: prenatal or birth injury, congenital malformation, infection, head trauma, brain tumour or other neurodegenerative conditions. In some persons, the cause remains unknown.
Few are aware that there are several different types of epilepsy. The symptoms seen during a seizure depend on which part of the brain is affected. Epilepsy is generally associated with the tonic-clonic (grand mal) seizures that affect the whole body and is manifested by stiffness and shaking. On the other hand, in absence seizures (petit mal), the individual may just stare for a few seconds while, in focal epilepsy, only part of the brain is affected and there is generally no loss of consciousness, just some abnormal movements of the limbs. We are fortunate that, with the medical treatment available today, 70 per cent of persons with epilepsy have their seizures controlled.
So why is epilepsy still so little spoken about? Why isn’t it a ‘trendy’ condition but is rarely discussed in the media? Why are so few persons with epilepsy ready to share their experience and admit that they have it to their friends and colleagues? The biggest hurdles are the negative sociocultural attitudes towards epilepsy that still pervade educational, occupational and recreational spheres.
Some still mistakenly consider epilepsy as an illness which hinders employment. Others perceive it as lack of intelligence. Such erroneous public perceptions have been found to proliferate negative attitudes and drive persons with epilepsy to withdraw socially, in order to avoid discrimination and stigma.
Huge efforts are presently being made to address these misconceptions by the Caritas Malta Epilepsy Association, in conjunction with the Department of Clinical Pharmacology and Therapeutics at the University of Malta. The vision of the association is to achieve a better life for persons with epilepsy.
Four thousand persons in Malta deserve better- Janet Mifsud
The Caritas Malta Epilepsy Association offers free training to educational institutions. The attitudes of educators have a big impact on any child’s academic performance, social skill development and future accomplishment. This is even more important for a child with a chronic condition such as epilepsy.
Free sessions on basic information about epilepsy and first aid for seizures are also offered to other professionals such as healthcare professionals, social workers and police officers but also to the public at large.
The Caritas Malta Epilepsy Association is affiliated to the International Bureau for Epilepsy, which, together with the World Health Organisation and the International League Against Epilepsy, is working on the Global Campaign Against Epilepsy: Out of the Shadows.
These efforts are highlighted annually on International Epilepsy Day, which falls on the second Monday of February. This year it is today, February 8. More than 130 countries join together on this occasion to highlight this condition, speaking with one global voice.
International Epilepsy Day 2021 will see a number of landmarks and buildings around the world, such as the Colosseum and the Eiffel Tower, being lit purple to mark the day. Malta joined this global initiative with the lighting of five key buildings in Valletta: Auberge de Castille, Palazzo Castellania, Palazzo Ferreria, Chevalier House and Casa Demandols on February 6, 7 and 8.
The Caritas Malta Epilepsy Association is grateful for the support by the Office of Prime Minister; the Office of the Deputy Prime Minister and Ministry for Health; the Ministry for Social Justice and Solidarity, the Family and Children’s Rights; the Ministry for the Inclusion and Social Well-being and the Ministry for Finance respectively, which made this possible.
We can all endeavour to play our small part. We can all shine a light on epilepsy. Four thousand persons in Malta deserve better.
For more information and support contact maltaepilepsy@gmail.com
Janet Mifsud is professor, clinical pharmacology and therapeutics, University of Malta and also an advisor to the Caritas Malta Epilepsy Association.