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PRESS RELEASE: embargoed until Monday 9 February 2015
Launching International Epilepsy Day
65 MILLION people around the world live with epilepsy
International Epilepsy Day will launch around the world on Monday 9 February 2015. Organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), International Epilepsy Day will provide the platform for people with epilepsy to share their experiences and stories with a global audience and thereby to build a stronger epilepsy community.
Developed in line with a strategy to advocate for appropriate legislation to guarantee 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 disease due to the stigma attached;
- it is treatable, yet 40% of people living with epilepsy in wealthier countries do not receive appropriate treatment. Over 70% 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:
- #epilepsyday on Facebook, Twitter and Instagram.
- #epilepsyday in photos: Around the world people with epilepsy will use smartphones to catch the mood of the day on #epilepsyday message cards in landmark locations. With membership stretching from New Zealand to the US, this will be a major activity!
epilepsy.org is a key repository for information on International Epilepsy Day.
In the European Parliament an exhibition tells the stories of people with epilepsy from around the world; official launch by Carlos Moedas, EU Commissioner for Research, Science and Innovation and hosted by Brian Hayes MEP, on 10 February.
Athanasios Covanis, IBE President, said "International Epilepsy Day is the opportunity to lend a global voice to people with epilepsy. These are our most powerful advocates, which can have devastating consequences, affecting all aspects of the lives of people with epilepsy. Some of their stories, showing bravery in the face of advertisy, 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 mile-stone, 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 diseases of the brain that are characterized 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 disease, they are not the disease 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 disease and a global problem that recognizes no class distinction or global boundary, affecting all ages, races, social classes, and countries.
- It is estimated that 65 million people have epilepsy.
- 2.5 million new cases are diagnosed annually .
- In the developed world, 40% of people with epilepsy do not receive appropriate treatment. This figure rises to over 80% 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% are preventable.
- With appropriate treatment, up to 70% of people with epilepsy become seizure-free.
- 30% of people with epilepsy will be drug resistant.
About the International Bureau for Epilepsy (IBE)
- IBE is an international umbrella organisation of national epilepsy associations, which was founded in Rome in 1961.
- IBE exists to improve the social condition and quality of life of people with epilepsy and those who care for them by increasing awareness, understanding and knowledge of epilepsy.
- IBE currently has a membership of 132 epilepsy associations, based in 98 countries worldwide.
- www.ibe-epilepsy.org
About the International League Against Epilepsy (ILAE)
- ILAE was founded in 1909 and is the world’s preeminent association of Epileptologists, neurologists and other healthcare professionals working in the field of epilepsy.
- ILAE is working towards a world where no persons’ life is limited by epilepsy by ensuring that health professionals; people with epilepsy and their care givers; governments and the public, have the educational and research resources essential to understanding, diagnosing and treating persons with epilepsy.
- ILAE, with a membership policy of one member association (chapter) per country, has 121 chapters.
- www.ilae.org
Contacts
- International Bureau for Epilepsy: Ann Little, Executive Director - [email protected]. T: +353 (0) 1 210 8850
- International League Against Epilepsy: Priscilla Shisler, Administrative Director - [email protected]. T: +1 860 586 7547
See Annexe for contact information at country level.
Press Release Annexe: COUNTRY CONTACTS
If you wish to find a contact in a country other than those listed below, please contact IBE Head Office +353 1 210 8850, or
AUSTRALIA
Epilepsy Action Australia
Carol Ireland, Gillian Gardner
+61 2 9856 7086
+61 2 9856 7093
CHINA
China Association Against Epilepsy
Zhen Hong, President
+ 861 065 250 423
BRAZIL
ABE Brazil
Laura Guilhoto
Bruno Torres
+ 55 11 99181 6889
+ 55 11 97301 9097
CZECH REPUBLIC
Epistop and Czech League Against Epilepsy
Jana Zarubova
Petr Marusic
+420 602 133 699
CZECH REPUBLIC
SPOLEČNOST "E"
Petra Stehlíková
Alena Červenková
+420 241 722 136
BULGARIA
Association of Parents of Children with
Epilepsy
Veska Sabeva
+359 2 900 0080
CAMEROON
CODEF
Nsom Kenneth Ninying
+ 237 675 074 442
CANADA
Canadian Epilepsy Alliance
Aurore Therrien
+1 514 252 0598
DENMARK
Danish Epilepsy Centre
Helle Hjalgrim
+ 45 30 58 53 08
ECUADOR
National Epilepsy Centre and Association of
Parents of Children with Epilepsy
Mónica Ríos Rodriguez
+ 593 2 2905405
FINLAND
Finnish Epilepsy Association
Sari Tervonen, Liisa Metsähonkala
eeva-‐
+ 35 8503 684554
+ 35 8503 482164
GEORGIA
GSYE
Maia Alkhidze
+ 99 559 3511764
HONDURAS
Honduras Epilepsy Foundation
Eduardo Rodas
+504 9861 6255
HONG KONG
Epilepsy Action Hong Kong
Claudia Schlesinger
Stephanie Wong
+ 852 2820 0111
INDIA
Indian Epilepsy Association
Vrushali V. Nadkarni
Man Mohan Mehndiratta
+ 911 123 232 742
INDONESIA
Yayasan Epilepsi Indonesia
Aska Primardi
Fadjar Setyanto
‐epsy.org
‐epsy.org
+62 218 4991458
IRAN
Iran Epilepsy Association
Hamideh Mostafaei
++09121813682
IRELAND
Epilepsy Ireland
Mike Glynn
Peter Murphy
Paul Sharkey
+ 353 1 455 7500
ITALY
FIE
Dr. Francesca Sofia, PhD
+39 347 78 59 219
MALAWI
Malawi Epilepsy Association
Action Amos,
Francina Gondwe
+265 999 020469
+265 184 0549
MALTA
Caritas Malta Epilepsy Association
Matthew Michael Attard
MAURITIUS
EDYCS Mauritius
Youssouf Noormamode
+230 57905144
MEXICO
GADEP
Lilia Núñez Orozco,
+52 55596 71819
NAMIBIA
Epilpesy Namibia
Harmiena Riphagen
+264 8132 26834 USA
Epilepsy Foundation
Ken Lowenberg
+301 918 3755
NETHERLANDS
Kempenhaege
Dr. A. de Louw
+31 40 2279364 ZIMBABWE
Epilepsy Support Foundation
Clotida Chinyanya
+263 772 240 749
NETHERLANDS
SEIN
Casandra van Laerhoven,
+312 35588444
PORTUGAL
EPI-‐APFAPE
Cristina Stuiver
SCOTLAND
Epilepsy Connections
Shirley Maxwell
SIERRA LEONE
Epilepsy Association of Sierra Leone
Max Bangura
+232 78535234
SOUTH AFRICA
Epilepsy South Africa
Marina Clarke
+27 82 853 4860
UGANDA
Epilepsy Support Association Uganda
Augustine Mugarura
+256 774 077 589
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