Most of us were transfixed in front of our television and mobile devices a few weeks ago, watching the inauguration of Joe Biden as President. Few may have paid attention to the person leading the oath which Biden repeated. That was John Roberts, US Chief Justice of the Supreme Court. A hugely important position. Yet, Roberts has also publicly stated that he has one of the most misunderstood medical conditions: epilepsy.
Epilepsy is the most prevalent chronic neurological disorder with an incidence of approximately 1% of the population worldwide; that is around 50 million people, with approximately 4000 persons in Malta across all ages. Epilepsy is currently defined as a tendency to have recurrent seizures (sometimes called fits). A seizure is caused when the brain activity and messaging between brain cells (neurones) becomes abnormal, leading to mixed messages being sent to various parts of the body. These appear as seizures or periods of unusual behaviour, sensations, and at times loss of awareness.
The International League Against Epilepsy classifies epilepsy in over forty different types and conditions. Epilepsy is classified “generalised” when the discharge affects the entire brain cortex. The main seizures types in this group are tonic-clonic (grand mal) and absence (petit mal). An epilepsy is called “focal” (can also be referred to as “partial”) when the electrical discharge causing it occurs in a specific area of the brain. An epilepsy is referred to as being “focal” (also known as partial) when the electrical discharge causing it occurs in a specific area of the brain. Simple partial seizures result in no loss of consciousness. On the other hand, complex partial seizures are characterised by automatisms. There are various possible aetiologies for seizures and epilepsy across various ages: prenatal or birth injury, or congenital disorders, CNS infection or trauma, head trauma, stroke, brain tumour, and neurodegenerative conditions.
According to the World Health Organization, 70% of persons with epilepsy can live a seizure-free life if treated properly. Current anti-epileptic medication can control seizures in about 70% of individuals. In Europe, it is estimated that there are 10 million persons with epilepsy, 30% of whom are refractory to the drug treatment presently available and have one or more seizures per month.
Despite these medical advances which have resulted in 70% of persons with epilepsy being seizure free, epilepsy is still surrounded by huge social burdens, misconceptions and is very rarely discussed in public. In Malta, it is a condition with is unfortunately still associated with a huge stigma. It is very rarely spoken about despite it being more common than ALS, autism or ADHD. Epilepsy is a condition which can have a significant negative impact on the quality of life a person, ramifications which are primarily due to the prevailing attitudes of society at large.
Understanding epilepsy and seizures is key to raising more awareness of this condition’s impact on a patient’s general medical and psychological health. People with epilepsy can contribute to society as attested by various other famous persons who have epilepsy. This list includes Hugo Weaving, actor, Lord of the Rings; Martin Kemp, actor and Spandau Ballet bassist; Susan Boyle, singer; and Neil Young, singer.
Addressing stigma towards epilepsy by educators in educational settings is a key step in ensuring an improvement to the quality of life of persons with epilepsy. A study carried out some years ago by the University of Malta and Caritas Malta Epilepsy Association (CMEA), assessed the perceived stigma towards epilepsy by a group of educators who attended in-service training courses on epilepsy organised by CMEA. Over 100 educators (primary and secondary school teachers, personal social development, guidance teachers and learning support educators) were asked questions about the individual perception of epilepsy, before and after the training sessions. Before training, some of the attendees thought that all seizures make persons fall. Most admitted to being worried, afraid and taken by surprise on seeing a seizure for the first time. Some thought that all children with epilepsy had learning difficulties. These misconceptions were addressed throughout the course and a similar survey held post-training, clearly indicated that most were very keen to learn more about epilepsy, develop teaching strategies for children with epilepsy, prepare a learning environment for children with epilepsy, and learn how to co-operate with parents of children with epilepsy.
This awareness cannot stop with educational institutions but must be widened to prospective employers and other social institutions. Caritas Malta Epilepsy Association (CMEA) was set up by voluntary workers in 1996. Now it lists almost 300 members. The Association is for persons with epilepsy and their families. Through education, it aims to promote local awareness about epilepsy. This is vital to tackling the experienced by people with this condition in society, particularly in the employment sector. CMEA also works towards improving healthcare services, treatment and social acceptance of epilepsy, as a serious yet treatable brain disorder. It offers free training on epilepsy to all those organisations that request it.
The Caritas Malta Epilepsy Association is affiliated with the International Bureau for Epilepsy, which together with World Health Organization and the International League Against Epilepsy, is working on the Global Campaign Against Epilepsy: Out of the Shadows. This is a unique joint venture which has the mission to improve acceptability, treatment, services and prevention of epilepsy worldwide.
These efforts are highlighted annually on International Epilepsy Day, which falls on the second Monday of February. This year it is today, 8th February 2021. More than 130 countries join together on this occasion to highlight this condition, speaking with one global voice.
Malta also will be shining a light on epilepsy today, International Epilepsy Day 2021. Several landmarks and buildings around the world, such as the Colosseum and the Eiffel Tower, being lit purple to mark the day. Malta will be joining 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 6th, 7th and 8th February 2021. Caritas Malta Epilepsy Association is appreciative of the immense 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 Wellbeing and the Ministry for Finance respectively, which made this possible.
For more information www.caritasmalta.org/epilepsy; [email protected]
Janet Mifsud, Professor, Department of Clinical Pharmacology and Therapeutics, University of Malta; Advisor, Caritas Malta Epilepsy Association
Claudine Marika Aitken, Secretary, Caritas Malta Epilepsy Association