NEWSLETTER OF THE INTERNATIONAL BUREAU FOR EPILEPSY - ISSUE 1 2016 INTERNATIONAL Epilepsy News Reporting epilepsy news for 53 years 1963-2016 YES, I can! International Epilepsy Day � PRESIDENT'S LETTER A world day for International Epilepsy News epilepsy and Issue 1 - 2016 EDITORIAL TEAM Editor and Coordinator: Ann Little other news! Email: [email protected] Regional Sub Editors: � Youssouf Noormamode (Africa) � Chahnez Triki (East Mediterranean) Epilepsy Association. My task was to give � Anastasia Vassou (Europe) a welcome speech on behalf of IBE and a � Tomás Mesa (Latin America) scientific speech. The meeting highlighted � Mary Secco (North America various scientific and educational issues � P Satishchandra (South East Asia) related to epilepsy, including a session on � Denise Chapman (Western Pacific) epilepsy in resource-restricted settings. Advisors: � Athanasios Covanis Dear Friends In March, I was invited to the 3rd EMEC- � Robert Cole In January, the Scientific and Organising UAE Epilepsy Congress to give a speech � Sari Tervonen Committee (SOC) for the 32nd Interna- and chair a session on the social issues in � Mike Glynn tional Epilepsy Congress met in Dublin to CEMA region that included speeches on � Ding Ding choose topics and speakers. stigma, employment, treatment gap and � Philip Gattone � Meetings of the IBE Management Com- driving. Two of the speakers were Najib Najib Kissani � mittee and the IBE/ILAE Congress Finance Kissani, Vice President and Chahnez Triki, Man Mohan Mehndiratta � Janet Mifsud Committee also took place, addressing Chair, IBE Eastern Mediterranean Region. I also participated in the CEMA General � Lilia Núñez-Orozco budgetary issues related to various con- � Assembly. Anthony Zimba gresses and joint contracts. � Emilio Perucca International Epilepsy Day celebrations Later that month I participated, on behalf � Helen Cross in Strasbourg on 2nd February was an of IBE, in a very interesting meeting in the � Sam Wiebe Romanian Parliament regarding national excellent opportunity to communicate INTERNATIONAL RELATIONS with Members of the European Parlia- epilepsy issues and how they could be ment (MEP) on the need for improved solved. The meeting was under the aus- AND PARTNERSHIPS treatment and services for people with pices of Romania Health & Family Com- WHO epilepsy across Europe. Posters were dis- mittee, Chamber of Deputies Romanian IBE is in official relations with the World Health Organisation (WHO). played in the exhibition area, with stories Parliament. An interesting meeting where ECOSOC of people with epilepsy and photographs the urgent need for evidence-based coordinated actions in improving epilepsy IBE enjoys Special Consultative Status on the from the 'Yes, I can!' photography compe- Economic and Social Council of the United tition! healthcare and treatment access were discussed. Special reference was made to Nations (ECOSOC). During this very important event a group CoNGO the lack of most 3rd generation AEDS in of us including Sari Tervonen, Philippe IBE is a member of The Conference of NGOs Romania compared to most European Ryvilin, Astrid Nehlig, Edouard Hirsch and in Consultative Relationship with the United countries. two mothers (Antigoni Kallimachou from Nations CoNGO. Cyprus and Francesca Sofia Francesca We are, at present, in the second half of EFNA from taly), contributed to successfully our term in office and the time has come IBE is a member of the European Federation of Neurological Associations (EFNA). meeting 36 MEPs. Our mission was to to think about what we have achieved EPF increase awareness of the need for im- and, in addition, to new projects and activities. We should always be inspired by IBE is a member of the European Patients' proved services for people with epilepsy Forum (EPF) across Europe, and the world, including the patients’ needs and deliver coordi- nated joint actions. All rights, including moral rights, reserved. No part support for research projects. The result of this publication may be reproduced, stored in a was an increase in membership of the With best wishes to all, retrieval system, or transmitted in any form or by European Advocates for Epilepsy group any means, without the prior permission in writing from 24 to 55 members. from the publisher. The Editor reserves the right to edit content for reasons of space or clarity. The views In January, I was invited to participate in expressed in this magazine are not those of the pub- the 12th national Iranian epilepsy con- Athanasios Covanis lisher. Articles covering medical aspects of epilepsy gress in Tehran, organized by the Iranian President are not intended to be taken as advice; they are not intended to replace medical care. 2 International Epilepsy News In this issue PHOTO COMPETITION RESULTS - page 4 Dear Readers We had a tremendous reaction to the Yes, I can! photography competition with more than 300 entries from all corners of the world. Our cover for this issue features a happy image, the ILAE HISTORY - page 14 winning photo in the mobile phone/ tablet category. You can find more winning images overleaf. Joanna Burzec shares with us the story of her very rare form of epilepsy, which involves music, which you will find very interesting indeed. We are grateful to Joanna for sharing her experience with us. Ted Reynolds brings us the next episode of the fascinating story of ILAE, which had been held back from the last issue. Already I am looking forward to Part 10! International Epilepsy Day was particularly successful in the European Parliament, where no less than 35 private meetings were held with Members of the European Parliament. By the page 17 end of the event, the membership of the European Advocates PRAGUE OFFER - for Epilepsy ad hoc group had risen to 56. You can meet them all beginning on page 10. JOANNA'S STORY - page 8 Also in this issue is news of a very special offer on registration fees for the Epilepsy & Society Conference in Prague, news from Swaziland and Uruguay and much more besides. Until next time - good reading, Ann Little Editor Coming in the next issue MORE NEWS from around the world International Epilepsy News 3 First Prize Camera Section Kenneth Oakes was 19 years old when he started developing partial seizures during which he would lose the ability to talk or exchange even a few words. He was having five to 10 seizures a day. At one point, after a night in hospital following a seizure at work, he returned to the studio to find his employer at his desk with his phone and computer who asked for his resignation. He was told because of his “condition” he was not permitted to hold the position any longer. Fast forward, and at the age of 26 years, having undergone years of tests, a small be- nign tumor was found within his left front temporal lobe, believed to be the cause of his seizures. He was told that surgery would provide a 60% chance of becoming seizure free! Now more than 4 months since surgery he Kenneth Oakes, Meadvillw, PA, USA remains seizure free, although recovery was "Three Months Seizure Free" difficult. First Prize Phone/Tablet Section Alessandra Seu, Italy: "Enjoying the Ride". The competition judges were greatly touched by the sheer delight shown on the faces of Alessandra's son Leonardo and her husband, Stefano, as they enjoyed a fairground ride at an amusement park in their home town of Lodi. Leonardo, who is eight years old, is affected by Dravet Syndrome. 4 International Epilepsy News YES I can! PHOTOGRAPHY COMPETITION The International Epilepsy Day photo competition attracted more than 300 powerful photo- graphs from around the world. The winning photo in each cat- egory is awarded a prize of US$1,000. HIGHLY COMMENDED The judges also chose 6 photographs, which they considered should be deemed Highly Commended Neenad Joseph Arul, Mumbai, India "The Leap" A little girl jumps with a steel glass as a red flag blows in wind. This young girls lives in the small hut on pavement. Dipayan Bhar, Kolkata, India "Playing" International Epilepsy News 5 Majda Dejlová, Prague, Czech Republic "To Accomplish" Lisa Cummings, Parkton NA, USA "Finger-painting" This is a photo of my 26 year-old daughter, Deborah, who has a rare disease called tuberous sclerosis and epilepsy. She suffered brain damage as the result of many seizures and functions at age 26 as a two year old. We love Deb immensely and priorities our day around doing what makes her happy. She is our hero. Brave beyond belief. This was her first experience finger-painting and her expression is wonderful. Jérôme-Camphyn-Payelleville "Laetitia and Célestine" Laetitia was subject to significant discrimination. She was considered slow, lazy or even as being on drugs. Joining in a conversation was problematic; she didn’t always understand, or quickly grasp, what was being said. The disability of her epilepsy is invisible, except when she is having a seizure. Marriage and, especially, baby Célestine finally contributed to social recognition - that she is the same as everyone else. It’s her epilepsy that is the difference. Plabon Das, West Bengal, India "Yes, I can fly!" 6 International Epilepsy News ROYAL SUPPORT IN SWAZILAND Mbusomi Mahlalela, Swaziland Epilepsy Organization sent this report to International Epilepsy News Similar to most royal households around ing structure, the Sibaya, advocating for mobilization strategies aimed at maximiz- the world, most Swazi royalty are engaged access to farming land for people living ing income generating projects meant for in different developmental and charitable with disabilities, since their exclusion from vulnerable people with epilepsy, many of initiatives. Prince Bandzile, who is the economic activity impacts negatively on whom are unemployed and do not receive patron of Swaziland Epilepsy Organiza- national development programmes. a disability grant. There have been conten- tion, has demonstrated his great leadership At organizational level, the Prince has tions that epilepsy isn’t a disability, hence qualities in addressing the plight of people mandated the Board and Management to their exclusion from the grant.