PRESENTATIONS FROM THE CONGRESS
The 11th ECES took place from Wednesday, 15 October to Friday, 17 October 2008. The theme of the Conference was Active Life and Epilepsy and each day focussed on different aspects of achieving goals in life and a better Quality of Life. In addition to prominent medical experts in the field of epilepsy, speakers were drawn from those working in epilepsy support and people with experience of epilepsy. The workshops and sessions gave delegates the opportunity to discuss and interact with each other in an open and amicable atmosphere. The presentation notes on some of sessions held are available below.
Epilepsy on My Mind and in My Brain (Maria Haag Turner)
Over time we can find many different ideas and pictures about reasons why and how epileptic seizures occur. Some of these old ideas and prejudices we have definitively thrown overboard, others are still on our minds and we find them in many different ideas, thoughts and expressions of and about people with epilepsy. Many of us have created individual ideas about the occurrence of seizures which influence how we associate with (or relate to?) the condition, consciously or unconsciously. Usually these ideas and pictures have little or nothing to do with the affective brain lesion. In this session we would like to follow the question of how the ideas and pictures occur in our minds, what role they are playing in the development of people with epilepsy and how they are influencing the event of seizures.
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Epilepsy in Contemporary Literature (Peter Wolf)
Presentations of epilepsy in arts and fiction are an important part of its cultural history. They both reflect and can influence public attitudes. They may appear as detailed descriptions of seizures or of characters with epilepsy, as briefer comments or as metaphors. It is often possible to recognize the source of information which writers use when they address this subject. In many instances this is some personal experience such as a writer having had seizures himself, having a relative or an acquaintance with epilepsy or having been impressed by the observation of a seizure in a foreigner. In contemporary fiction epilepsy appears with amazing frequency. This may to some extent be explained by a generally high interest of present writers as well as the general public in the brain and in neurological conditions. But often fiction writing also reflects the emotional component which many people feel relative to epilepsy.
Epilepsy in fiction can be analyzed according to many possible aspects including the accurateness of description, ways in which somebody’s life is affected by epilepsy, and treatment. From a literary standpoint it is important to ask which role epilepsy fulfils in the structure of a literary work.
The majority of contemporary writers researches epilepsy quite well when they write about it, so complete nonsense can be found but is rare. However, only few writers are aware that epilepsy is a well-treatable condition and many seem to believe that antiepileptic drugs do more harm than good. The precipitation of seizures by emotional upset is much more common in fiction than in reality. On the positive side, characters with epilepsy in literature are most often described in ways that are more likely to evoke empathy than stigma.
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Flying Circus (Stine Jakobsson Strømsø)
Epilepsy is a strange diagnosis. It is unpredictable and somewhat hard to come to terms with. The life of Stine Jakobsson Strømsø is therefore a bit surreal; the comical and also somewhat tragic situations she finds herself in, makes living quite interesting.
Stine Jakobsson Strø
msø thinks that people who cope with their epilepsy with a sense of humour have better quality of life and are better at dealing with the various situations that may arise.
During the presentation she gave some examples of how to manage the daily life with epilepsy.
Learn to laugh with them!
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Its worth it! Engage young people, strengthen your association!
Facilitator: Einar Jørstad (Norway)
Contributors: Stine Jakobsson Strømsø (Norway) & Mads Boe (Denmark) & Annika Thyselius (Sweden) & Minna Virtanen (Finland)
Its worth it! Engage young people, strengthen your association!
The seminar consists of presentations from the participating countries of Epic-youth (Norway, Denmark, Sweden and Finland) where they show examples of excellent youth work. In addition to this the seminar focus on the benefits youth work has for the associations, both as an area for empowering young people, but also to increase the member base, possibilities, economy and human resources of the association. They plan to inspire the associations to make an arena for young people with epilepsy!
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Epilepsy in the Family Children (Athanasios Covanis)
Epilepsy is the most common brain disorder and affects over 1% of the youth of the population. Epidemiological studies have shown that epilepsies are more frequent in childhood than adolescence. Various epilepsy syndromes that appear in childhood may remit, change character or persist in adolescence. Other syndromes have an onset in adolescence.
Recent advances in developing new antiepileptic drugs have contributed very much to better management and better quality of life of young people with epilepsy. Yet, the diagnosis of epilepsy, even in the mildest forms and in most advanced countries, has a negative psychosocial profile for the individual and the family. This in turn will affect the individuals psychomotor development and psychological and social well being of all members in the family. Overprotection will lead to behavior problems, long lasting dependency, low self-esteem and negative personality. The childs education will be influenced by variable degree by the attitudes of the parents and teachers towards epilepsy but also from the parental and family disharmony. The social integration will depend not only on the reaction of the individual and their families to the diagnosis and treatment of epilepsy but also the societys attitudes towards the condition. In more severe forms the impact in autonomy, learning, and the individuals isolation will be even greater.
A diagnosis of epilepsy in a child has far-reaching consequences for the entire family. For this all persons involved in the care and education of the child should have the scientific facts about seizures, epilepsies and medication. In addition the child and family should be encouraged to perform normal activities.
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Communicating our Information (Sue Mitchell)
How to Cope with Media (Kaija Lindström)
During the last two years the Finnish Epilepsy Association has attracted wide media coverage. The publicity in itself is not our main value. But via the media you can increase openness, correct information and availability of proper care in epilepsy which are mentioned as main goals in FEAs strategy. At the same time you can ease the work of our local member associations and volunteers.
Every proper opportunity to talk openly about epilepsy should be used in co-operation with people with epilepsy and professionals. The Finnish Epilepsy Association has for example arranged media conferences, panel discussions and education during different occasions. They have also collaborated with a film producer who produced the film The Year of The Wolf.
The public and journalists are interested in life stories and faces. They want to know how it is to live with epilepsy. The Finnish Epilepsy Association have collected names of people who are capable and willing to be in the public eye. They call them epilepsy ambassadors. They have different types of epilepsy and have different stories. So they represent the diversity of epilepsy. Their neurologist and information officer speak with the ambassadors if possible before interviews. It is of great importance that their neurologists and other professionals are available to check the stories and give the latest facts about epilepsy to media.
You should not be afraid of journalists. They are ordinary people doing their jobs. Your task is to provoke their interest in epilepsy and help them to do good stories. You can give them knowledge of epilepsy, ambassadors and experts. Epilepsy may not be media sexy but it is worth writing about! It is to your common advantage to give a correct picture of epilepsy.
Présentation des actes de la Conférence
Ce fut donc pour la première fois quune Conférence Européenne de lInternational Bureau for Epilepsy se tenait en France. Comme les dix premières, la langue officielle de la Conférence était langlais, et, nous remercions les organisateurs de nous avoir permis dy inclure un programme pour les francophones.
Les présents actes de cette Conférence reprendront les travaux des sessions ouvertes aux francophones.
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EUCARE–POLITICAL ACTION GROUP SESSION
Concerted Action for Change
Chairs: Hanneke M. de Boer (Netherlands) & Martin J. Brodie (UK)
Living with epilepsy can be very difficult at times. People with epilepsy often experience prejudicial behaviour in many spheres of their lives and this is nothing new, it has been ongoing for many centuries and in many cultures. Rajendra Kale (India) said: The history of epilepsy can be summarised as 4,000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma. Legislation based on centuries of stigmatisation existed until recently, or still does in many countries. Laws impacting on the lives of people with epilepsy are out-dated, failing to adequately promote and protect their human rights and in some cases even violating these rights.
Whilst the epilepsy world has made great advances in the physiological understanding of epilepsy and in improving therapy, progress towards a better understanding and a more accepting world for people with epilepsy still often lags behind.
This is the problem and we are all aware of it. Thankfully there are people who do not take a problem lying down, but who stand tall with a determination to make change happen. They take action and prove that when concerted action is taken, the result can be positive. These are people with a CAN DO attitude. People with epilepsy themselves, their families and friends must be at the forefront of this battle against stigmatisation, using examples of best practice already available into which we can tap: the development of anti-discriminatory legislation for people with epilepsy in Colombia, the development of driving regulations in the EU, new broadcasting guidelines in the UK and Japan, the abolition of legislation in India that prevented people with epilepsy from marrying, to name but a few.
This session, organised by the EUCARE Political Action Group, calls for Concerted Action for Change!!
EUCARE: Political Action Group – Opening Remarks
Hanneke M. de Boer (Chair Political Action Group / Secretariat Global Campaign Against Epilepsy)
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FONDE: A Major New International Research Initiative
Martin J. Brodie (Chair EUCARE Management Group / Treasurer ILAE)
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Alzheimer Europe: How to Make Dementia a European Priority – Promoting your Message
Jean Georges (Executive Director Alzheimer Europe)
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WHO Views on and Commitment to Epilepsy
Tarun Dua (Medical Officer, WHO Programme for Neurological Diseases and Neuroscience)
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