Millions of people around the world live with epilepsy
International Epilepsy Day was launched around the world on Monday, February 9.
Organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), International Epilepsy Day provided the platform for people with epilepsy to share their experiences and stories with a global audience and thereby build a stronger epilepsy community.
The day was developed in line with a strategy to advocate for appropriate legislation to guarantee the human rights of people with epilepsy and to empower people with epilepsy to maximise their quality of life.
International Epilepsy Day aims to highlight that:
* epilepsy still remains a hidden condition due to the stigma attached to it;
* it is treatable, yet 40 per cent of people living with epilepsy in wealthier countries do not receive appropriate treatment. Over 70 per cent of those living in low income countries cannot even access epilepsy medication regularly;
* lack of treatment imposes a huge financial burden on national health systems;
*research and legislation remain key issues in improving the quality of life of persons with epilepsy.
Around the world, IBE and ILAE associations are holding events to highlight issues of particular relevance at national or regional level, while, internationally a series of activities using the hashtag #epilepsyday will provide global outreach, uniting the voices of IBE and ILAE associations in the more than 125 countries in which the organisations are represented around the world:
Athanasios Covanis, IBE president, said: “International Epilepsy Day is the opportunity to lend a global voice to people with epilepsy, as our most powerful advocates.
“While the condition can have devastating consequences, affecting all aspects of the lives of people with epilepsy, some of their stories, showing bravery in the face of adversity, are showcased on epilepsy.org, and demonstrate clearly that epilepsy is much more than seizures.”
Emilio Perucca, ILAE president, added: “International Epilepsy Day is a major step forward in raising awareness and improving the lives of people with epilepsy throughout the world.
“Its establishment is synergic with the approval, on 2 February, of the first WHO resolution on epilepsy by the WHO executive board in Geneva.
“The resolution, a true milestone, calls for a coordinated action in all member states to improve epilepsy care, protect the civil rights of people with epilepsy and increase investment into epilepsy research.”
Facts about Epilepsy
*Epilepsy is a collective term for a large group of conditions of the brain that are characterised by seizures.
* A seizure is like an internal electrical storm. It is the consequence of abnormal, excessive discharges of nerve cells.
* Seizures are symptoms of the condition, they are not the condition itself, yet it is the seizures and associated stigma, rather than the condition itself, which ruin the lives of people with epilepsy.
* Epilepsy is the most common serious brain condition and a global problem that recognises no class distinction or global boundary, affecting all ages, races, social classes and countries.
* It is estimated that 65 million people worldwide have epilepsy.
* Two and a half million new cases are diagnosed annually.
* In the developed world, 40 per cent of people with epilepsy do not receive appropriate treatment. This figure rises to over 80 per cent in developing nations.
* Epilepsy can kill. Sudep (Sudden Unexpected Death in Epilepsy) is responsible for 33 000 deaths in Europe alone each year, of which 40 per cent are preventable.
* With appropriate treatment, up to 70 per cent of people with epilepsy become seizure-free.
*Thirty per cent of people with epilepsy will be drug resistant.
About Epilepsy South Africa
Epilepsy South Africa aims to create a society in which people with epilepsy and other disabilities have equal opportunities to function optimally, to achieve their fullest potential in all spheres of life.
It is the only national organisation serving people with and affected by epilepsy
For more information contact Marina Clarke at nationaldirector.no@epilepsy.org.za, or at 0860 EPILEPSY (374537).
