Epilepsy and Disability EU Directive on Driving ILAE Celebrates 100 Years!

l Internationa Epilepsy News Newsletter of the International Bureau for Epilepsy Issue 3 - 2009

Epilepsy and Disability EU Directive on Driving ILAE Celebrates 100 years!

International Epilepsy News 2009 1

The President’s Message

Dear Friends International In this, my first President’s Message, I would like to begin by thanking Susanne Lund for her Epilepsy News informative letters in previous issues of IE No. 3 - 2009 News. I hope that I will be able to emulate her writing skills during my term. Editor Carlos Acevedo A flame was lit for people with epilepsy in Co-ordinator Ann Little th 1961 when IBE was born during the 9 ILAE Regional Sub-editors meeting in Rome. The emblem of the candle Africa: Noeline de Goede has burned brightly ever since. Latin America: Tomás Mesa In two years time we will celebrate the 50th North America: Lisa Boylan anniversary of the Bureau and I hope that South East Asia: Marshal Hsi many of you will join us in Rome in 2011 Western Pacific: Sherman Goh where this important landmark will be hon- Advisors th oured during the 29 International Epilepsy Congress. Abdulaziz Al-Semari: Saudi Arabia The last four years have seen many important achievements under Susanne’s Mike Glynn: Ireland excellent leadership and I hope that I may be able to build on them during the Eric Hargis: USA lead up to the 50th anniversary and beyond. We have had our second series of Shung-Lon Lai: Taiwan elections, seen the establishment and growth of our seven Regional Executive Susanne Lund: Sweden Committees and the creation of the brilliant Promising Strategies program— Janet Mifsud: Malta just to name a few. Vinod Saxena: India I hope my own Presidency will see similar successes building on the work of Mary Secco: Canada Susanne’s years and in areas of epilepsy in which I am particularly interested Grace Tan: Singapore such as stigma, driving, employment and generic AEDs. As part of this, I Anthony Zimba: Zambia will be co-chairing the Global Campaign against Epilepsy along with Nico Solomon Moshé: USA Moshé, the new President of ILAE. The Global Campaign has been running Emilio Perucca: Italy for twelve years but there is still much that it can achieve, and this opinion is Samuel Wiebe: Canada also shared by Nico. IBE’s joint working with the League is, I believe, one of Editorial Correspondence our great strengths and something we must continue to nurture and build on. Ann Little The great epileptologist Dr William Lennox suggested the creation of the International Bureau for Epilepsy Bureau as long ago as 1936. Sadly, he did not live to see the motion of Dr 11 Priory Hall, Stillorgan, Abraham Moscovich, of Argentina, to create IBE passed at the ILAE general Dublin 18, Ireland assembly at the University of Rome in 1961, which led to the establishment Email: [email protected] of the International Bureau for Epilepsy. Subscription I look forward to working with you for the great cause of epilepsy for the Three years: US$30 next four years. Five years: US$48 All the best, Contact [email protected] for Mike Glynn further details. President Copyright International Bureau for Epilepsy or as PARTNERING SPONSORS stated. Views expressed and information included herein do not necessarily IBE acknowledges the support of its PLATINUM PARTNER: reflect official policies or endorse- generous partnering sponsors. To UCB Pharma learn about partnering opportunities ments of the International Bureau for with IBE, please contact: GOLD PARTNERS: Epilepsy or its members. Dainippon Sumitomo Pharma Co., Ltd. Ann Little, Executive Director Articles covering medical aspects of Email: [email protected]. Eisai Europe Limited epilepsy are not intended to be taken as advice. All content is copyright and may not be reproduced without prior The International Bureau for Epilepsy, with membership of permission. 120 epilepsy associations based in 92 countries worldwide, The Editor reserves the right to edit works to improve the quality of life for all people affected content for reasons of space or clarity. by epilepsy.

2 International Epilepsy News 2009

The Editor’s Letter

Dear friends, This issue of IE-News is going to have a special flavour as we Contents look back at the very successful congress in Budapest. This was 4 Organic Mental Disability a time of great activity as IBE reached the end of a term of 6 General Assembly in Budapest office during the General As- 7 Celebrating the ILAE Centenary sembly on 1st July. We also had the opportunity during the Open- 8 Budapest Photo Album ing Ceremony to make a special 10 New EU Directive on Driving presentation to the International League Against Epilepsy to 13 Promising Strategies Program 2010 mark the 100th birthday celebrations of ILAE. This issue is full of photos to remind us of the congress. 14 Epilepsy and Disability Dr Tomás Mesa is an expert in epilepsy and disability and we 16 Ouch! The cost of Dental Treatment have a special report that he has prepared about this difficult 18 The talented Seahorse Club issue. We also include a report on an important Latin American Regional Workshop that took place in Santiago de Chile and 19 Action Zone! In Mauritius which involved the PAHO regional offices. The workshop addressed the topic of organic brain disability, of which epilepsy as one of the three most relevant causes, with emphasis on rehabilitation and job placements. From Europe comes significant news on a new Directive on Driving of the European Union, which will see common regulations come into place for all IBE Member States. Although the Directive relates to Europe, it will be a useful tool for other countries in other regions in trying to establish fair driving regulations for people with epilepsy. In China the Seahorse Clubs for people with epilepsy have 4 been exhibiting the work of some of its very talented members. Their craftwork was on view in Budapest and shows us the 10 8 incredible skills of these young people. Finally you can read an interesting article about the high dental costs faced by people with epilepsy in Denmark to repair the damage caused by their epilepsy—either through falls or as a side effect of medication. A very busy and interesting magazine for you to enjoy! Best wishes for everybody. 8 Dr Carlos Acevedo Sch. 4 IE News Editor 18

International Epilepsy News on the Web IE News is now available on the IBE website www.ibe-epilepsy.org Previous issues can be found under the tab IE News, while the current issue is available to IBE Members on the Members section. 14 810

International Epilepsy News 2009 3

Organic Mental Disability

Dr. Carlos Acevedo, IBE Vice-President Latin America reports on an important regional workshop held in August in Chile

regional workshop titled nesses and by 2020 it is estimated • Ethical and clinical issues; “Organic Mental Disability” that it will represent nearly 15% of A was held in Santiago de Chile life years lost to illness adjusted to • Models of community care in from 19th to 21st August, in which disability at a global level. organic mental disability and the main issues were intellectual dis- challenges for the future. Organic brain illnesses are associated ability, dementia and epilepsy. The with high symptomatic epileptic co- It was most important to hear the workshop was organized by: morbidity. To this situation we must message of the patients who empha- • World Health Organization (WHO) add a hidden burden of prejudice, sized their rights and complaints ignorance, stereotype and rejection. about the current system and the dif- • Pan-American Health Organization ficulties they face in their daily lives. (PAHO) The confrontation of these organic brain disorders requires preventive The final outcome will be a technical • Chilean Ministry of Health measures and rehabilitation in order document that will provide references • Rostros Nuevos (New Faces), a non to integrate people with disability to for future work on organic mental governmental organisation (NGO). the family and society. disabilities in Latin America. Attendance numbers reached three The aims of the workshop were to Regarding epilepsy, a general point hundred, with delegates representing improve services for people with a of view was given, emphasizing the different areas related to disability. disability related to organic brain different clinic cases and the need to The event also had the distinguished damage; to identify their needs; and distinguish between benign genetic attendance of: to establish the main issues and cases; severe symptomatic cases; strategies for its management in the refractory cases and the diversity of • Dr Benedetto Saraceno, Director of Latin American region. To attain this current treatments. the Department of Mental Health goal, it is necessary to create a con- and Drug Abuse, WHO, Geneva Also stressed was the need to use the tact network, a team strategy and to plural term “epilepsies” instead of • Dr José Luis di Fabio, Manager In define the technical cooperation areas singular “epilepsy” and that the per- the Area of Technology, Health of PAHO and WHO for the period centage of cases that have a disability Care and Research, WHO/PAHO, 2009/2011. is low and does not exceed 10% of Washington patients, with children and older peo- • Dr Jorge Rodríguez, Coordinator of On an international level, ple more affected. The brain patholo- the Mental Health, Disability and gies frequently related to epilepsy Rehabilitation Project, WHO/ mental disorders now have perinatal brain origin, sequels of PAHO Washington account for 22% of all central nervous system infections, • Dr Hugo Cohen, Mental Health chromosomic illnesses, vascular illnesses Sub-Regional Advisor WHO/ brain illnesses, dementia, cerebral PAHO for South America paralysis, etc. More than 80% of the During the workshop, there were cases of epilepsy do not constitute a • Dr Armando J Vásquez Barrios, disability. Regional Advisor on Rehabilitation lectures on the current reality, organic mental disabilities, and the advances WHO/PAHO Chile The cases of young people with epi- and experiences in planning current lepsy and mental disability, aged • Dr Víctor Aparicio, Mental services in Latin-America. The issues between the 15 to 25 year, from the Health Sub-Regional Advisor addressed were: Dr Alfonso Asenjo Workshop School WHO/PAHO for Mexico and that belongs to the Chilean League Central Latin-America • General and regional viewpoints; against Epilepsy, who were success- • Mr Javier Vásquez, Human Rights • International evidence of rehabilita- fully introduced into the workforce Lawyer WHO/PAHO Washington. tion and social placement; during the past 10 years, was also presented during the workshop. On an international level, mental • Experiences in rehabilitation and in disorders represent 22% of all ill- social and work placements; It was concluded that rehabilitation

4 International Epilepsy News 2009

Pictured above: Dr José Luis di Fabio, WHO/PAHO, and a group photo of the workshop participants

and social and work placements abilities, to train employers, and to • A joint effort of WHO, PAHO, the require the collaboration of different teach family members to avoid over- government and NGOs. areas, such as the family, the health protection. system, the community, the education We must thank the participation of At the end of the event, Dr Benedetto system and, especially, the workplace. WHO, PAHO, the Ministry of Health Saraceno emphasized the need for the Isolated help is really appreciated but and representatives of the NGOs for following: it does not last long. The reality is their devotion to improve the quality that more than two thirds of people in • An agreed international definition of life of this important, discrimi- this group are unemployed; with of disability; nated and relegated group of people stigma being one of the biggest prob- • Up to date community care models; in our society. lems that affect people with epilepsy, • Up to date legal tools; Finally, it is very important to ensure especially if associated with a dis- that people with a disability are not ability. Therefore, it is essential to • Appropriate financing mechanisms; denied their civil rights. In this arena consider the requirements of the mar- • Consideration of national realities; the International Bureau for Epilepsy ket place in order to adjust as neces- is an effective tool. sary the curriculum of sheltered • Workable technical strategies; workshops. It is also necessary to • A clear view of the magnitude of strengthen young people’s social the problem

Martha Curtis with Anson Chan and Ada The transformative power Wong from Enlighten Hong Kong of music

“I am alive today because I had a violin.” Martha Curtis explained. Epileptic seizures began for Martha at the of age three; her music training began when she was five. Music performance and intractable epilepsy co-existed in her life for over thirty years until her right hippocampus, amygdala, and half her right temporal lobe were removed in three brain surger- ies. Today, Martha is seizure-free, and her ability to perform and memorize difficult pieces of music is greater than before the operations. Her story has featured on “60 Minutes” and “The Today Show” in the US. Through the generosity of Mrs Elaine Forsgate, who brought Martha to Hong Kong, Enlighten – Action for Epilepsy and 75 guests met with the talented musician at a special event at Hong Kong’s some of the music that kept her spirit driving for- Mandarin Oriental Hotel in June. During the event, ward all these years. Her success story has single- Martha shared her amazing story and gave a violin handedly changed preconceived theories about performance. brain and memory function, crediting music with In her multi-media presentation, Martha used saving her life and allowing her experience beauty. words, scans of her own brain, and performed Orla Gilroy, CEO Enlighten Hong Kong

International Epilepsy News 2009 5

2009GENERAL ASSEMBLY

closing moments of taken up in verbal presentations of Italian order of religious nuns, was THE each term of office are reports. To minimise this aspect of announced as the winner of the Vol- a momentous time and 1st July 2009 the meeting, all reports were circu- unteer Award 2009 for her work on was no exception. lated electronically in advance of the behalf of people with epilepsy in the With over 100 people attending the assembly so that all Members could Cameroon, where she had been General Assembly in Budapest, this have access to the documents. In Bu- posted for the previous 35 years. Un- was a time: dapest delegates were invited to raise fortunately, because of her work any queries they might have on any commitments, and an imminent move ♦ To review the last four years and of the reports before their approval. to a new posting in Paraguay, Sr to accept the reports of Officers, Constitutional Amendment Franca was not able to be with us in Task Forces, Working Groups, Budapest to personally accept her Committees and Commissions; Aware that in some countries it is award. difficult to sustain an epilepsy asso- ♦ To ballot on the motion to amend Before the assembly closed, each the IBE Constitution to introduce ciation, either because of low population numbers or limited development, Member of the International Execu- Regional Membership; it was proposed by the International tive Committee was introduced. A ♦ To honour those who had served Executive Committee to amend the special presentation was made to on the International Executive Constitution to introduce a Regional Susanne Lund, the outgoing Presi- Committee and who were retiring; Membership category. This would dent, by Mike Glynn, the incoming President. Susanne was thanked for ♦ To present their Membership Cer- allow a group of countries to work collectively to create a regional epi- her great work over the previous four tificates to newly ratified Full and years and received a standing ovation Associate Members; lepsy organisation and could facili- tate people in regions such as the from those present. ♦ To recognise those Members who Caribbean islands. The next General Assembly will take had donated to the Solidarity place in Rome in 2011 when IBE Fund in the last two years; Relevant papers were circulated to Full Members some celebrates its Golden Jubilee. ♦ To announce the recipient of the months ago to allow for Volunteer Award 2009. electronic balloting. The And all that was before the inaugural ballots of those not pre- address of the new President, Mike sent, together with the bal- Glynn. So five hours flew by and lots of Full Members pre- before we knew it we were applaud- sent in Budapest, were ing the members of the Incoming sufficient to ratify the pro- Executive Committee! posed changes. The amended Constitution has Thanks to the great work of John now been widely circu- Schneider at Epilepsy Foundation, lated and is also on the the assembly opened with an audio- IBE website. visual look back on the trials and triumphs of IBE and its members in Volunteer Award the previous two years. 2009 Those Members who have attended a Sister Franca de Simone General Assembly in the past will be (pictured right in green aware of how much time can be blouse), a member of an

6 International Epilepsy News 2009 IBE presented a special proclamation to ILAE at the congress in Budapest to mark the occasion of the League’s centenary celebrations. The document was created on high quality handmade vellum. The IBE and ILAE logos were hand painted by Irish artist Noeleen Frain, who also used handcrafted calligraphy for the text. The result looked fantastic!

To Celebrate a Centenary of ILAE Services to People with Epilepsy 28th International Epilepsy Congress, Budapest hereas, the International League Against Epilepsy (ILAE) was founded on August 30th, 1909 at the Hotel Bristol in Budapest; and WWhereas ILAE was created to understand the epidemiology of epilepsy, to increase the awareness of epilepsy, to understand the pathology of epilepsy and to promote the creation of national epilepsy organizations; and Whereas today ILAE has a vision to achieve a world in which no person’s life is limited by epilepsy; and Whereas ILAE has 96 chapters and 15,000 members throughout the world; and Whereas the International Bureau for Epilepsy shares ILAE’s vision and goals; Now therefore be it resolved that the International Bureau for Epilepsy commends ILAE for a century of service to the global epilepsy community and congratulates ILAE on this the occasion of their centenary celebration.

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8 International Epilepsy News 2009 7 8 Budapest Photo Album A picture paints a thousand words, as they say, and this 1. The IBE Members Poster Display ran the length of small collection of images shows just how busy we were busy walkways at the congress centre and was made in Budapest. IE News would like to thank all those who possible through the support of Eisai Europe Limited sent us their photos of the congress. Unfortunately we do 2. The IBE Information Stand in the Exhibition Hall not have space to publish each one, but all of them have was busy with visitors been uploaded to the IBE website gallery for you to enjoy. 3. Grace Tan, IBE Treasurer pictured with Robert Cole, Chair Regional Committee Western Pacific 4. A portion of the attendance at the General Assembly 5. The Gala Dinner pre-dinner drinks reception in the grounds of the National Art Gallery 6. Some of those who attended the Editors Network meeting gathered for a group photo 7. Hungarian dancers entertained during the Opening Ceremony 8. Australian delegates enjoying the Gala Dinner 9. Delegates from the Czech Republic at the EpiStop Association Members Poster 10. Some of the artwork of Budapest schoolchildren at the Children’s Art Exhibition 11. A special meeting took place between IBE and the Japan Epilepsy Association 12. A corner of the Exhibition Hall 13. Delegates from Thailand pose at the poster of the 9 Epilepsy Association of Thailand.

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International Epilepsy News 2009 9 12 13 New EU Directive on Driving and Epilepsy

Mike Glynn, Chair of the IBE Driving and Epilepsy Task Force, reports on the recently adopted European Directive 209/112 EC

The IBE Driving and Epilepsy Task as yet have no legislation and operate seizure driving these types of vehicles Force has received confirmation total bans on driving for people with but, under the new regulations, some- from Brussels that European Directive epilepsy. In general, these sorts of one with epilepsy who has been 209/112 EC came into law on the bans lead to many more people with seizure-free and off all anti-epileptic 29th August 2009.This Directive puts epilepsy driving who should not, drugs for 10 years or more, may apply into force the recommendations on because of the unfairness of the total for a licence. Most EU countries will Epilepsy and Driving of the expert prohibition, than in other countries. have to amend their existing legisla- working force led by Dr Eric tion to reflect these changes. The regulations provide for a one Schmedding, which reported to the year seizure-free period for Group 1 It is very important that IBE member European Commission in 2005. The vehicles (cars, vans, motorcycles). associations in EU countries now Directive also addresses amendments For some member states, such as bring this Directive to the attention of to legislation for driving and diabetes France and the Netherlands, these their legislators and ensure that the and driving and eyesight problems. new regulations may mean that people regulations are implemented. The European Union member states have with epilepsy will be worse off than Driving and Epilepsy Task Force will a time period of up to one year to before because the seizure-free period be examining ways that it can assist introduce new legislation or to amend can be shorter at present in these IBE member associations and ILAE existing legislation in line with the countries. For people with epilepsy chapters to ensure that these regula- Directive. For many of the member who wish to drive Group 2 heavy tions are brought into being and states that gained access to full goods vehicles (buses, lorries etc.) applied fairly in their countries. The membership of the EU in the recent the new Directive may offer some full text of the Directive, and further past, this may represent a huge hope. In many countries there is a information, can be found on the IBE change since some of these countries total ban on anyone who has had a website www.ibe-epilepsy.org.

Excerpt from the Directive Group 1 (cars, vans, motorcycles): allow drivers with recognised good nor cause any functional impairment 12.1. Drivers assessed under group 1 prognostic indicators to drive sooner. can be declared fit to drive so long as with epilepsy should be under licence 12.4. Other loss of consciousness: the this pattern has been established for a review until they have been seizure- loss of consciousness should be period which must not be less than free for at least five years. assessed according to the risk of the seizure-free period required for recurrence while driving. epilepsy. If there is an occurrence of If the person has epilepsy, the criteria any other kind of attacks/seizures a 12.5. Epilepsy: drivers or applicants for an unconditional licence are not one-year period free of further event can be declared fit to drive after a met. Notification should be given to before licensing is required. the licensing authority. one-year period free of further seizures. 12.8. Seizures because of a physi- 12.6. Seizures exclusively in sleep: 12.2. Provoked epileptic seizure: the cian-directed change or reduction of the applicant or driver who has never applicant who has had a provoked anti-epileptic therapy: the patient had any seizures other than seizures epileptic seizure because of a recog- may be advised not to drive from the during sleep can be declared fit to nisable provoking factor that is commencement of the period of with- drive so long as this pattern has been unlikely to recur at the wheel can be drawal and thereafter for a period of established for a period which must declared able to drive on an individual six months after cessation of treatment. not be less than the seizure-free period basis, subject to neurological opinion Seizures occurring during physician- required for epilepsy. If there is an (the assessment should be, if appro- advised change or withdrawal of occurrence of attacks/seizure arising priate, in accordance with other rele- medication require three months off while awake, a one-year period free vant sections of Annex III (e.g. in the driving if the previously effective of further event before licensing is case of alcohol or other co-morbidity). treatment is reinstated. required. 12.3. First or single unprovoked 12.9. After curative epilepsy surgery: seizure: the applicant who has had a 12.7. Seizures without influence on see “Epilepsy”. first unprovoked epileptic seizure can consciousness or the ability to act: be declared able to drive after a period the applicant or driver who has never Group 2 (buses, lorries, etc): of six months without seizures, if had any seizures other than seizures 12.10. The applicant should be with- there has been an appropriate medical which have been demonstrated exclu- out anti-epileptic medication for the assessment. National authorities may sively to affect neither consciousness required period of seizure freedom.

10 International Epilepsy News 2009 An appropriate medical follow-up has been done. On extensive neurological investigation, no relevant cerebral pathology was established and there is no epileptiform activity on the electro- encephalogram (EEG). An EEG and an appropriate neurological assessment should be performed after the acute episode.EN L 223/34 Official Journal of the European Union 26.8.2009 12.11. Provoked epileptic seizure: the applicant who has had a provoked epileptic seizure because of a recog- nisable provoking factor that is unlikely to recur at the wheel can be declared able to drive on an individual basis, subject to neurological opinion. An EEG and an appropriate neurological assessment should be performed after the acute episode. A person with a structural intra- cerebral lesion who has increased risk of seizures should not be able to drive vehicles of group 2 until the epilepsy risk has fallen to at least 2 % per annum. The assessment should be, if appropriate, in accordance with other relevant sections of Annex III (e.g. in the case of alcohol). 12.12. First or single unprovoked seizure: the applicant who has had a first unprovoked epileptic seizure can be declared able to drive once five years’ freedom from further seizures has been achieved without the aid of anti- epileptic drugs, if there has been an appropriate neurological assessment. National authorities may allow drivers with recognised good prognostic indicators to drive sooner. 12.13. Other loss of consciousness: the loss of consciousness should be assessed according to the risk of recurrence while driving. The risk of recurrence should be 2 % per annum or less. 12.14. Epilepsy: 10 years freedom from further seizures shall have been achieved without the aid of anti- epileptic drugs. National authorities may allow drivers with recognised good prognostic indicators to drive sooner. This also applies in case of “juvenile epilepsy”.

International Epilepsy News 2009 11 LESIA completes stigma initiative

third of pupils do not first aid to a person having a seizure. know what epilepsy These leaflets were distrubuted is. Moreover, they are countrywide, mostly to young people. not interested in For the first time in Lithuania, there learning about this was a film created (10 minutes condition. Half of duration). Those taking part in the children who film included not only doctors and responded do not specialists but also people with realise that they could epilepsy. They disclosed major help a child with problems and sadnesses in their lives. epilepsy through The film was shown during the offering friendship. popular TV show “ABC of Health”. Therefore, to spread At the end of the initiative, LESIA this information in the arranged a press-conference, which society, all available mass media was was attented by reporters from The Lithuanian Association for the uesd: radio, TV, the press. There various newspapers, health Integration of People with Epilepsy were radio reports, which explained magazines, and by radio reporters. It (LESIA) has completed an initiative LESIA activities, highlighted was the perfect opportunity to “I am the Same as You”, aimed at problems of people with epilepsy and explain about epilepsy, its decreasing stigma in society. The showed that the integration of people pecularities, problems of integration impetus for this initiative came from with epilepsy is not possible without and to invite media representatives to a public opinion poll (1,000 adult the support of society. cooperate further. respondents), which proved that there is still lack of information about Two leaflets were published with a LESIA hopes that “I am the Same as epilepsy in society. The poll was also total edition of 14,000. One was You” has reached its goals: to conducted in Lithuanian schools, designed to provide brief information decrease stigma and to bring society with 990 pupils of various ages about epliepsy, the other one closer to people with epilepsy. involved. The results showed that one contained instructions on providing Dr Danute Murauskaite, CEO LESIA

Teaching the Teachers in Malta

Victoria Dimech reports

to manage the condition were given. Very interactive discussions took place during which participants were invited to ask questions or to express their views about the different aspects of the condition. There was also time to play ‘Action Zone!’ which was found to Teachers test their knowledge with ‘Action Zone!’ be simple but informative. What was considered very interesting and effective Caritas Malta Epilepsy Association recently held its were the different life experiences which were shared fifth in-service course for teachers in collaboration with those taking part by people who have epilepsy. with the Education Department. Twenty-two partici- This made the course more tangible and realistic. pants attended both from both private and government Through this type of activity our association makes schools ranging from primary to secondary classes. more contact with all schools and as a result we are During the three-day course, general information contacted by more people to share our expertise and about epilepsy, the different types of seizures and how experience. Our sixth course is already in the pipeline.

12 International Epilepsy News 2009 Promising Strategies 2010

Members have been invited to apply for funding people with epilepsy by introducing mechanisms to under the 4th Round of the Promising Strategies ensure funding is spread as globally as possible. A Program, with the closing date for the first ele- shortlist of projects will be made in November by ment, the submission of Letters of Intent, being the International Executive Committee and these 31st October. So far, this very successful initiative will be invited to submit full proposals. Successful has provided funds to 29 projects in developing projects will be announced in March 2010, after a regions. Now IBE is looking to support even more review of the submitted proposals is completed.

Come to Porto!

25th—27th August 2010 The charming Portuguese city of Porto has been chosen to host the 12th European Conference on Epilepsy & Society in August 2010. So be sure to mark these important dates Annual Report 2008 Annual Report in your diary. The European Regional Committee is now busy completing The latest annual report is now available. the conference programme and planning special social The report has been circulated to Members, events for delegates. is available to view on the IBE website and may also be requested in writing to More information will be available shortly! the IBE office at [email protected].

International Epilepsy News 2009 13 The term ‘Disability’ is used to leisure time and safety. lepsy. We also must take into account describe people with physical or in- In people with epilepsy and a disabil- the best educational options and tellectual impairment of heterogene- ity, different issues may negatively pedagogical aspects for them to have ous brain etiology, which limits their influence them, making the disability the chance to aspire for a job or ca- independence and functioning. In worse. Some of the issues are the reer, in order to reach a good social Chile Law No 19.284 defines disability side-effects of antiepileptic drugs, standing. The health aspect is very as any person that, as a consequence especially those that cause sleepiness important, because it is needed to of one or more physical, psychic, or memory and concentration altera- attain the best drug management, sensory deficiency, congenital or tions. Other issues are, the quantity with the lowest side-effects, that acquired, predictably as permanent and seriousness of central nervous gives the best crisis control and has and, no matter what caused it, limits system injuries, especially if located the cheapest price. Then, a basic issue by at least a third educational capacity in brain zones related to cognitive is to achieve the best employment and employment or social placement. functioning, mainly temporal and placement. A good example of this is According to WHO/PAHO estimates frontal lobe. We need to consider the ADA (Americans with Disabilities suggest that, of the general population, negative psychosocial environment Act), public law of the United States between 7.5 and 10% could be con- too— for example, the stigma of of America (Public Law 101-336, sidered to be disabled. having epilepsy. 1990), which aims to integrate people On the other hand, in epilepsies, In order to give good care and treat- with disabilities in each segment of which international prevalence ment to these people, we have to society and to assist in their finding, reaches 4 to 8 every 1,000 of the improve not only their quality of life and keeping, employment. Finally, population, most have a normal life, due to their epilepsy, which generally the psycho-social aspects must also without intellectual impairment and is more complex in its treatment and be considered, which means their just a minority, less than the 10%, crisis control, but also we have to duties, rights, leisure time, safety, have or develop a mental sub normal- consider the problems caused by their living skills, family, etc., in order to ity, which is considered as an intel- disability. On one hand there are the give them a better quality of life. lectual disability. educational aspects, for their families One of the challenges of the IBE is to Mental disability is defined as an and their environment—such as revaluate the current status in differ- intellectual capacity less than 2 DS of friends, teachers, employers, health ent regions of the world, to see how the average or an intelligence quo- professionals, and authorities; they issues such as education, school, and tient of less than 70. It is specifically have to be educated about epilepsy pedagogy, legal and work placements defined as a deficit or concurrent and disability in every aspect that for people with disability and epilepsy disturbance, starting prior to 18 relates to each group. Nowadays, are being addressed. Even though years of age, of the current adjusted these patients are not institutionalized they are a minority group, people activity, at least in two of the fol- as before, but are part of the commu- with epilepsy and a disability deserve lowing areas: communication, per- nity; therefore, if possible, we have to comprehensive support to improve sonal care, daily living skills, social incorporate them completely. One of their quality of life. Everything above skills, and personal abilities, use of the most important international mentioned is required to identify the community resources, self-control, activities has been the ILAE/IBE/ best options and to help them to full education, employment, health, WHO Global Campaign Against Epi- social inclusion.

14 International Epilepsy News 2009

EPILEPSY AND DISABILITY

EPILEPSIA Y DISCAPACIDAD

interpersonales, utilización de recursos manera sus crisis y al menor costo comunitarios, autocontrol, académicas, posible. Posteriormente un item fun- trabajo, ocio, salud y seguridad. damental es aspirar a su mejor inser- Report by Dr Tomás Mesa En las personas con epilepsia y disca- ción laboral. Un ejemplo de buen Director – Chilean League pacidad, una serie de factores pueden manejo de estos, es ADA (Americans against Epilepsy and influir negativamente, agravando la with Disabilities Act), ley pública de Secretary of the IBE Latin discapacidad. Entre estos, están los Estados Unidos de Norteamérica American Committee efectos colaterales al utilizar medica- (Public Law 101-336, 1990), cuyo mentos antiepilépticos, especialmente objetivo es integrar a los individuos Director Liga Chilena aquellos que producen sedación, con discapacidad en cada segmento Contra la Epilepsia y sueño o alteraciones de la memoria y de la sociedad y otras nuevas iniciati- Secretario Comité Latino concentración. Además, la cuantía y vas para lograr puestos de trabajo. Americano del IBE gravedad de las lesiones en el sistema Por último considerar los aspectos nervioso central, especialmente si psico-sociales, es decir sus deberes, están ubicadas en zonas cerebrales derechos, ocio, seguridad, vida do- Se habla de ‘Discapacidad’ al referir- que tienen relación al rendimiento méstica, familia…etc, para poder se a un grupo de individuos con im- cognitivo, especialmente lóbulo tem- darles la mejor calidad de vida. pedimentos físicos o intelectuales de poral y frontal. Por otro lado, hay que Unos de los desafíos para el IBE, es etiología cerebral heterogénea, que considerar el ambiente psicosocial re-evaluar el estado actual en las limita su independencia o funciona- negativo, como por ejemplo el estig- diferentes regiones del mundo, como miento. En Chile, la ley 19.284, con- ma de tener epilepsia. están entre otros, los aspectos educa- sidera discapacitada, a toda aquella Para el buen manejo y tratamiento de tivos, escolares o pedagógicos, lega- persona, que como consecuencia de estas personas, no solo hay que con- les y de inserción laboral de estas una o más deficiencias físicas, psíqui- siderar mejorar la calidad de vida por personas con discapacidad y epilep- cas o sensoriales, congénitas o adqui- su epilepsia, que en general son de sia, que a pesar de ser una minoría ridas, previsiblemente de carácter mayor complejidad en su tratamiento entre la gente con epilepsia, se mere- permanente y con independencia de y control de crisis, sino que tener en cen todo el apoyo para su mejor la causa que la hubiera originado, vea cuenta los problemas que acarrea su calidad de vida. Todo esto para poder obstaculizada, en a lo menos un tercio, discapacidad. Por un lado están los configurar las mejores opciones y su capacidad educativa, laboral o de aspectos educativos a sus familiares y ayudarlos a la más plena inserción integración social. Según estimaciones entorno. Entre estos, están los ami- social. de OPS/OMS, en la población general gos, maestros, empleadores, profesio- habría entre un 7.5 a 10% de personas nales de salud y autoridades, a quienes discapacitadas. se debe educar sobre epilepsia y dis- Bibliografía Por otra parte, en las epilepsias, cuyo capacidad en todos los puntos que les 1. Epilepsy and Employment: is there a prevalencía global alcanza 4 a 8 por atañe a cada estamento. Hoy en día, problem?. Edited by John E. Chaplin 1,000 habitantes, la mayor parte de estos pacientes no son institucionali- PhD. los individuos que la presentan, tienen zados como antiguamente, sino que 2. Prague 1999. una vida normal, sin impedimentos son parte de la comunidad, por lo que 3. European White Paper on Epilepsy. intelectuales y solo una minoría, debemos incorporarlos en lo posible EUCARE. 2001. 4. Taller: Inserción Laboral en Personas menor al 10%, presentan o desarro- plenamente. En este sentido, unas de llan un retraso mental, siendo este con Discapacidad y Epilepsia: Liga Chi- las actividades internacionales más lena contra la Epilepsia.(LICHE). San- considerado como una discapacidad importantes, ha sido la Campaña Glo- tiago de Chile. 20 de Agosto 2004. de tipo intelectual. bal de Sacar a la Epilepsia de las 5. Seminario en Guatemala: Discapacidad La Discapacidad Intelectual, se define Sombras. Por otro lado considerar y Epilepsia. IV Congreso Latinoamerica- como una capacidad intelectual menor todos y los mejores aspectos escola- no de Epilepsia. Ciudad de Guatemala. a 2 DS del promedio o un cuoficiente res o pedagógicos: para que tengan la Guatemala. 8 de Septiembre 2006. intelectual menor a 70. Se precisa posibilidad de aspirar a un oficio o 6. Discapacidad Mental. Atrévete como un déficit o alteraciones concu- profesión para lograr una buena in- 2004;57:17-20. (Revista del Fondo Na- cional de la Discapacidad. Chile). rrentes, de inicio previo a los 18 años, serción social. El aspecto de salud es 7.II Seminario Internacional de Discapaci- de la actividad adaptativa actual, en al sumamente importante, ya que se dad Mental de base orgánica. América menos dos de las siguientes áreas: debe lograr el mejor manejo de sus Trabaja para Cambiarle la Cara a la Dis- comunicación, cuidado personal, vida medicamentos, los con menos efectos capacidad Mental (19 al 20 de Agosto doméstica, habilidades sociales o colaterales, que controlen de mejor 2009. Santiago de Chile.

International Epilepsy News 2009 15

OUCH!

Danes fight for dental cover

“It is not exactly fun to have multiple dental crowns, a golden tooth, a bridge with three artificial teeth and chronic inflammation of the jaw because of epilepsy” Katja Lundh

Katja’s crown is clearly visible Text by: Helle Juhl Photo: Flemming Platz Translated by: Kitt Kolster

Epilepsy can be a heavy • Broken teeth and dental crowns Inexpensive though not economic burden due to clenching hard of teeth economical Having epilepsy is not good for your hard during a seizure If a person is granted reimbursement teeth. Many dental injuries are caused • Teeth that are knocked out or of his medical costs, the reimburse- by seizures and falls: still epilepsy break from a fall in connection to ment usually covers the least expen- patients are not reimbursed for their a seizure sive treatment - which is not always extra dental costs by the public sys- • Enamel cracks or injuries of the the most economical in the long run. tem. The consequences are poorer dental roots following hard blows An inexpensive set of dentures dental health and quality of life. This breaks more easily during seizures. • Injuries to the enamel due to side- is one of the results of a report on Poor dental health for a person with epilepsy and dental health produced effects of medicine (mouth dry- ness, vomiting and acid reflux) epilepsy can become a heavy burden on behalf of the Danish Epilepsy economically, as well as socially and Association. • Injuries impairing the develop- psychologically. The report also points to the fact that ment of teeth as a consequence of Danish epilepsy patients are worse epilepsy in early childhood years. Dental records of Katja off economically than the rest of the Poor teeth are a burden, not just eco- Lundh Scandinavian countries. In Norway, nomically but also psychologically 50 year old Katja Lundh does not Sweden and the Faroe Islands pa- and socially. Many people with epi- really have much to laugh about be- tients are automatically granted reim- lepsy describe how they try to hide cause epilepsy has taken a heavy toll bursement of dental treatment caused their teeth while speaking to others on her dental health. Her teeth are by epilepsy. and how they feel inferior because of permanently damaged from epileptic their teeth. They are also constantly seizures, and getting by on a mere A psychological load scared that a new injury might neces- early retirement pension, Katja Some of the predominant dental inju- sitate dental treatment that they sim- Lundh cannot afford to have her teeth ries caused by epilepsy are: ply cannot afford. fixed in the best possible way.

16 International Epilepsy News 2009 “The local authority has, on occasion, “It is not exactly fun to have multiple tion from a severe epileptic seizure granted me reimbursement of dental dental crowns, a golden tooth, a which happened twenty years earlier. costs covering the least expensive bridge with three artificial teeth and During a new seizure the encapsu- solution, which is not always the chronic inflammation of the jaw be- lated inflammation burst open and best; and you cannot apply for reim- cause of epilepsy. Even though I am the infected matter spread out bursement in connection with injuries no longer as young as I used to be, I through the mouth. On that occasion following a non acute disease,” Katja have always been careful about my she had to have a drain hole drilled in explains. teeth, which should be in a better her jaw, and was prescribed penicillin condition. According to my dentist before the inflammation was fully A heavy economic burden the state of my teeth is undoubtedly treated. Ever since she was a child, Katja linked to epilepsy,” Katja explains. Yet, it is one of her crowned teeth Lundh has suffered from multiple that bothers her the most because the types of epilepsy; she has seizures Old injury re-surfaced crown itself is visible. that cause loss of consciousness and Some injuries like, for instance, the also other very severe seizures. Seven two dental crowns, are directly “On average, I have about two major years ago she tumbled off her bicycle caused by epileptic seizures. Katja and life threatening seizures a year. during a seizure and hit her head so Lundh also has injuries to teeth that The recovery time is six to eight violently that her brain was injured. have cracked when seizures make her weeks. What a relief it would be if I As a result, she had to give up her job clench her teeth hard. And then there could just go to my dentist without as a psychologist. Since then she has are injuries following on a non acute having to worry about the cost or been on early retirement and she is disease as a consequence of medical how this is going to be covered” also a single mother. Therefore the side effects or old seizures. Katja comments sadly. vast dental costs are a heavy burden Once she had an inflammatory blister on her, in addition to the physical and just above her front teeth which was psychological inconveniences. caused by an encapsulated inflamma- Stalwart Supporter is Honoured

John Bowis receives the fellowship parchment from Sir Ian Gilmore

John Bowis, recently retired Member of the European Parliament (MEP) for London, was conferred with an honorary Fellowship of the Royal College of Physicians by President, Sir Ian Gilmore, in London on the 1st July. John has been a terrific supporter of people with epilepsy, and of IBE, for “If Julius Caesar, Peter the Great, John was presented with an IBE/ many years. He has spoken at Euro- Dostoevsky and Byron all achieved ILAE Ambassador for Epilepsy pean and International congresses so much in their chosen careers while Award in 2005. Although now offi- and also played an active role in the coping with epilepsy, why are people cially retired, John has said that he joint IBE/ILAE EUCARE initiative. so reluctant to be open about it to- will continue to support IBE and its He assisted at the launch of the day?”. work. EUCARE White Paper on Epilepsy at the European Parliament in 2001. More recently he headed up the EU He was previously awarded the Order Advocates Group of the EUCARE of the British Empire (OBE) by A strong believer in the need to bring Political Action Group and orches- Queen Elizabeth to recognise his epilepsy out of the shadows, in his trated a meeting of the Political Ac- untiring charitable work. speech at the launch of the White tion Group with other MEPs with an Paper on Epilepsy he stated: interest in epilepsy.

International Epilepsy News 2009 17

Seahorse Club shows its craftwork talents

Dr Ding Ding of the China Association Against Epilepsy, tells us about the talented members of the Seahorse Club, a self-help group of persons with epilepsy in Shanghai, China

Xiaolan with her Fuwa bead dolls

In the “Seahorse Club” of Shanghai, a self-help group for people with epilepsy, there is an art gallery that features the paintings, calligraphy, photography and handcrafts, which were created by members of the club. Among these artistic works, the Ye and Li are interviewed by the media handcraft flowers, dolls, fans, cross- stitching and small animals are the changed into a range of different girl. She cannot go to school because most attractive. The materials for flowers, including roses, tulips, and of her seizures. She has been learning creating these pieces are very cheap cherry blossom. Twigs, bouquets and handcraft making at the “sunny and readily available in our daily even potted landscapes are possible. school” (a special school for people surroundings and are then trans- She can also produce several types of with a disability) where she spends formed into elegant works of art butterflies with different postures. Ye most of each day. through the unique design and skilful used to own a craft shop, but had to She is good at making fans decorated work of the members. In June 2009, close it due to the severity of her sei- with Chinese painting. She sent one these handcrafts were brought to the zures. However, she never stops of her handmade Chinese fans to the 28th International Epilepsy Congress making handcrafts, since she consid- President of the 12th Summer Special in Budapest, Hungary, and were ex- ers this hobby to be the most impor- Olympics. Another fan was sent to hibited on IBE’s Information Stand tant part of her life. She enjoys it IBE at the end of 2007 as a Chinese in the Exhibition Hall. because she can forget her seizures entry in the Freedom in Mind Experi- when concentrating on her craft mak- Ye Zhuang is a 26-year-old woman ence exhibition. In 2008, she made a ing. “I have a dream”, says Ye, “I who has been suffering epilepsy for set of bead dolls called Fuwa, the hope that one day, when my seizures almost 10 years. Her hobby is mak- official mascots of the Beijing Olym- become well-controlled, that I will be ing stocking fabric handcraft, such as pic Games. She has just finished able to open my own shop to sell flowers and butterflies. Through her some papier maché mascots— these stocking fabric crafts , and be creative and talented hands, nylon Haibao—to welcome the 2010 able to manage the shop on my own.” stocking fabric in a rainbow of col- Shanghai World Expo. These hand- ours and patterns magically are Xiaolan Tao is a shy and reserved crafts are not only good souvenirs of

18 International Epilepsy News 2009 Origami Animals Chinese Painted Fans Stocking Fabric Cherry Blossom Li Tang Xiaolan Tao Ye Zhuang important events in China, but also a within a very short time. Several woman. The 2-week course will give reflection of her passion for life. months ago, she became an electronic people with epilepsy, especially ado- data entry person in a company, after lescents, a good opportunity to learn Li Tang has been fighting seizures being trained to use a personal com- a craft making skill, beginning with for almost 20 years, and even now puter. She sees this as a new start in simple hand skill training. Three the seizures haven’t stopped despite her life. She says, “I can handle my women will teach how to make undergoing epilepsy surgery. She work and rest time very well. I want stocking fabric butterflies, bean dolls, used to make fabric flowers as a tem- to maintain a good standard everyday and paper animal models. Analysis of porary job, which proved to be useful in order to ensure that I am adequate the effectiveness of the program will training for her hands. Most of her for this job; I don’t want to lose this be carried out to provide preliminary handcrafts are origami animals made position.” evidence of the behaviour interven- from poster paper. She can make tion approach, other than anti- miniature pieces of furniture using On the International Epilepsy Caring epileptic drugs, not only for the train- poster paper. In addition to these Day, June 28, 2009 in Shanghai, Ye, ees with epilepsy, but also for the crafts, she likes to do cross-stitching Xiaolan and Li were interviewed by trainers who have epilepsy. which requires more patience and the media about their handcrafts and concentration. about living with epilepsy. “Helping others makes me happy.” Ye, Xiaolan and Li became busier, Like other young woman, Li loves to In order to help more people with but happier. work; even if it is a very simple job epilepsy, the Seahorse Club plans to without any salary. She is so smart organize a handcraft course that will that she is able to learn new skills be taught by these three young

Although almost three years have passed since Action Zone! was produced, this educational tool still remains a big hit with epilepsy associations, hospitals, care cen- tres and families around the world. It is amazing how many of our Members send us photos where we can see the game in use. This photo is from ECDYS in Mauritius shows participants at an Educational Workshop for NGO leaders with their copy of the game. In the short report from Malta on page 12, you can Action Zone! see that our friends in Malta also use the board game to is still a Winner educate about epilepsy.

International Epilepsy News 2009 19 Getting ready for 2010 IBE will be involved in the organisation of the following regional congress, which will take place in 2010.

2nd East Mediterranean Epilepsy Congress Dubai, UAE 3rd - 6th March 2010

12th European Conference on Epilepsy & Society Porto, Portugal 25th - 27th August 2010

6th Latin American Epilepsy Congress Cartagena, Colombia Dates in August 2010

8th Asian & Oceanian Epilepsy Congress Melbourne, Australia 21st - 24th October 2010

20 International Epilepsy News 2009