12th ECES PORTO PRESENTATIONS
The 12th ECES will take place from Wednesday 25th August to Friday 27th August 2010. The theme of the conference is Epilepsy: so what? which analyses different aspects of living with epilepsy. The main objective of this programme is to reduce the stigma by discussing issues associated with epilepsy. In addition, the 12th ECES Programme is mainly based on topics suggested by members of the International Bureau for Epilepsy (IBE). The majority of speakers were also suggested by IBE European member associations. During the conference, delegates will also have a lot of opportunities to socialise and participate in discussion groups, parallel sessions and other programmed activities.
Launch of the European Report
One of the most significant events at the 12th European Conference on Epilepsy and Society in Porto will be the launch of the European Report on Epilepsy of the Global Campaign Against Epilepsy. This longawaited, important report, which is being published by the WHO, will be officially launched by Dr Matt Muijen, WHO Regional Advisor for Mental Health.
The report will bring together, for the first time, all available evidence from the region on the epidemiology, etiology and management of epilepsy and will be a valuable tool for those working for change at
To download Hanneke De Boer’s presentation, please click here (2.54 MB)
To download Mike Glynn’s presentation, please click here (6.11MB)
To download Matt Muijen’ s presentation, please click here (1.13MB)
Epilepsy brain and mind – Niall Pender, Ireland
Epilepsy has been associated with changes in cognitive and psychological functioning which can reflect underlying changes to the brain, the direct effects of seizures on cognitive functions and the possible side-effects of anti-convulsant medication. Certain forms of epilepsy can carry a greater risk of cognitive dysfunction such as medial-temporal sclerosis. Cognitive and emotional difficulties can be disabling for sufferers and their families and can also have a significant impact on both educational and occupational attainments. Epilepsy can also be associated with changes in emotional and psychological functioning including depression, anxiety and social withdrawal. The current talk will examine the nature of psychological difficulties in epilepsy focusing on the assessment and treatment of these conditions.
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Epilepsy and cognition – Melissa Filippini, Italy
Epilepsy is a complex syndrome and cognitive aspects have to be considered in order to define diagnosis and provide a rehabilitative project and prognosis. Cognition in epilepsy has to be studied considering a multi factorial model, including also the age of onset, the frequency of seizures and/or epileptiform discharges. Epilepsy can affect the development of neural networks subserving cognitive functions during critical periods of growing up. Rehabilitation can help to overwhelm these effects.
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Epilepsies, AEDs and health issues – Janet Mifsud, Malta
Epilepsy, which affects as many as 6 million people in Europe, is a heterogeneous chronic disorder characterized by recurrent seizures, which differ in nature, types of seizures, age at onset and aetiology. No single antiepileptic drug (AED) is appropriate in all types of epilepsies since the causes of epilepsy are extremely diverse, encompassing various heterogeneous genetic and developmental defects and infective, traumatic, neoplastic, and degenerative disease processes.
In addition, even though a large number of antiepileptic drugs (AEDs) that suppress or prevent seizures are now available, so far, drug therapy available will only control the onset of seizures and there are no pharmacological treatments that cure epilepsy or modify the detrimental course of the disorder. The selection of the appropriate AED is also made on a variety of specific factors, such as age, gender, underlying physiological conditions and possible drug interactions. The prognosis and quality of life of a person with epilepsy varies considerably. In addition, about 30% of patients remain resistant to drug treatment. This has major implications not only for other health issues, but also for independent living, education and employment, mobility, and personal relationships.
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Ethics in epilepsy – Ley Sander, UK
Ethics are the set of moral values that govern the interactions of oneself with others, with society and with the surroundings encompassing all spheres of life. In other words, ethics concerns the duties, obligations, and taking the right actions in our dealing with others.
Epilepsy is a multi-faceted condition which affects many domains of people’s life. As such there are many aspects to ethics in epilepsy. These involve the relations between people with the condition and their carers, family, peer group, health providers, and society as a whole.
Treatment issues, choice of treatments, decision to treat or not to treat, consent and assent for procedures and investigations all raise ethical issues but these may be particularly difficult when it involves those people in whom there are issues of mental capability. In this lecture, ethical issues that concern epilepsy care delivery and the relations that they create will be reviewed and discussed.
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Epilepsy is more a social condition than a medical one. Social aspects – Victoria Dimech, Malta
During this session we will discuss some of the various social impacts PWE and their families have to deal with. We will look into misunderstandings about epilepsy, labelling, stigma, discrimination etc. and what effect this can have on the quality of life, life choices, employment this can have. Often times these social problems further hinder a person’s achievement in life because their emotional and social development is affected.
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Epilepsy is more a social condition than a medical one. Medical aspects – José Lopes Lima, Portugal
These issues need to be addressed together with the medical aspects of the condition. Epilepsy requires medical intervention to be detected and identified, either clinically or with the help of complementary laboratory medical studies. Many of them have associated medical problems that must be handled together with the epilepsy: mental retardation, hemiparesis, progressive dementia, etc. depending of the common ethiology. Although the person with epilepsy has to be considered and managed as an individual person, with all the personal and social implications, as any other medical chronic condition, the main aim of the treatment is still the medical control of all the seizures generally by drug treatment or, eventually, by surgical approach.
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Driving and Epilepsy – Mike Glynn, Ireland
The EU’s Directive on driving regulations for people with epilepsy (Commission Directive 2009/112/EC) is due to come in to force in each of the European Union member states on or before the 29th August 2010. This date nicely coincides with the finish of our 12th European Conference on Epilepsy and Society in Porto. It would be nice to think everything would be done in an orderly fashion and that by the time we were leaving another great ECES everything would be tied down and there would be in place a uniform system for dealing with first seizures and diagnosed epilepsy for all European citizens for both cars, vans, motorcycles and for large vehicles such as buses, trucks and HGVs.
Indications are that many member states have not yet made any moves to bring the new Directive into law in their countries. This presentation will concentrate on the issues for IBE member associations in ensuring that the new regulations are enacted in their countries and, afterwards, operated correctly so that people with epilepsy get the fair treatment they deserve in regards to their opportunities to drive. Some member states may seek to avail of a facility to make their regulations tougher than the Directive’s recommendations but IBE members should seek to resist this as it is probably unsustainable due to pressure from EU citizens and groups for all people to have equal treatment under the law right across Europe.
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School and work Nelson Ruao, Portugal
Given that Epilepsy affects mostly children and young people and that education professionals know very little about this condition, it seems of utmost importance that EPI–APFAPE continues to develop initiatives of awareness. In this presentation, we want to share with other European associations our experience of intervention in schools, as well as teaching materials support.
In addition, this presentation will focus on our training experience in schools with the aim of promoting the integration of pupils with epilepsy and how the awareness of education professionals can promote academic potential and career guidance to each student taking into account the type epilepsy and their seizure frequency.
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Personal development opportunities Michael Alexa
What do Agatha Christie, Leonardo da Vinci, Theodore Roosevelt, Sir Isaac Newton and Price have in common? They all had – like the most of you – including myself had epilepsy. But all those famous people that I’ve mentioned have one thing in common – they NEVER gave up! They’ve had their goals and continued to reach them!
That’s something what I can only advise yourself to do too – set yourself your own goals and do anything to reach them – I’m doing it – that’s for sure. You’re deciding where your road is leading you to! There are many different tracks you can choose from – girlfriend and children, career, getting famous – why not Look at Prince!!! So believe in yourself If you really want to do something, you can do it! Epilepsy is just one part of your life!
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Photosensitive Seizures and Epilepsies Athanasios Covanis, Greece
Photosensitivity is sensitivity to flickering light source or pattern and is expressed in the EEG as a generalized spike and wave discharge and clinically by seizures most commonly tonic-clonic, myoclonic and absences. Other phenomena such as impairment of consciousness and/or pleasurable feelings do occur.
Photosensitive epilepsy occurs in 5 to 10% of young people with epilepsy. Examples of generalized idiopathic syndromes are: childhood and Juvenile absence epilepsy, Juvenile myoclonic epilepsy, Eyelid myoclonia and absences, generalized tonic/clonic seizures only (on awakening) and some myoclonic syndromes in infancy and childhood.
The treatment of photosensitivity is dependent upon the avoidance of the provocative stimulus and or antiepileptic drugs. The protective and avoidance methods are likely to be successful in the pure photosensitive epilepsies. Conditioning methods have been less popular. The choice of each protective measure will depend on the type of stimulus, the environment in which the person has to live and work the frequency of seizures and the type of epilepsy syndrome.
In the vast majority of patients with epilepsy and photosensitivity the use of AEDs is necessary. By far the most successful AED therapy has been Sodium Valproate with seizure free monotherapy results ranging from 67 to 95% in different epilepsy syndromes. Newer AEDs with a broad clinical profile such as Levetiracetam, Lamotrigine Topiramate, Zonisamide and Lacosamide do suppress generalized spike and wave discharges. These drugs may be an alternative for those patients with troublesome VPA adverse events. However their efficacy on photosensitivity should match the excellent risk/benefit ratio existing for VPA. There is not particular age at which photosensitivity disappears.
The Role of the EU in Providing Support for People with Epilepsy Gay Mitchell, Ireland
My speech will concentrate on what steps the European Union can take to help those with epilepsy. Healthcare is, under the principle of subsidiarity, a competence of member states, but there is scope for cooperation and sharing of best practice among those states.
I will look at how the Parliament can promote this through initiatives like the Disability Intergroup of which I am an active member, and the Working Group on Human Dignity of which I am President. I will talk about a draft motion for a resolution that I hope to sponsor in the Parliament, picking up where former MEP John Bowis left off. Such actions can keep issues such as epilepsy on the agenda and ensure that the Commissioner for Health is doing all within his power to promote Europe-wide solutions to problems that sufferers may face. It also helps to keep the issue on the agenda of the Member States through the EU Presidency.
The Parliament serves also as a forum for civil society and support groups to have a voice. I have worked with organisations such as Brainwave in Ireland. Such organisations can have strong interests in initiatives such as cross-border healthcare and the Parliament can give them an influence upon that process.
I will examine the role of the EU’s research funding mechanism FP7 (and its successor FP8) and how this can play a role in combating epilepsy and mitigating its affects on sufferers. For example, recently published research partly funded by the EU has uncovered new information on the nature and causes of focal epilepsy.
Influencing Policy Tarun Dua, Switzerland
Epilepsy affects 50 million people worldwide, 80% of whom live in low and middle income countries. People with epilepsy are vulnerable because of the disorder itself and because of the stigma attached to it. Stigmatisation can lead to discrimination, and both the epilepsy itself and the stigma attached can lead to limitations in economic, civil, political, social and cultural rights. With effective and inexpensive treatments, more than two-thirds of people with epilepsy can be seizure free; however more than 75% of them in low and middle income countries are not appropriately treated.
In order to improve acceptability, treatment, services and prevention of epilepsy worldwide, Global Campaign Against Epilepsy (GCAE) was launched in 1997 as partnership of WHO, ILAE and IBE. One of the objectives of the GCAE is to assist departments of health in countries to identify needs and promote education, training, treatment, services, research and prevention of epilepsy in their countries.
This presentation will discuss the role of different stakeholders and synergies resulting from partnerships in influencing policies at local and national level. The various ways in which WHO provides technical support to policy makers and service planners will be presented. This presentation will also discuss the role of research, advocacy and other mechanisms to influence policy and decision-making.
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EUCARE Political Action Group session – More concerted action for more change!
Chairs: Reetta Kalviainen, Finland & Janet Mifsud, Malta
More concerted action for more change!
We are all aware that living with epilepsy may not be easy. Apart from the seizures people with epilepsy are known to have to deal with prejudice, misunderstandings and even discrimination! The EUCARE Political Action Group (PAG) in January 2005, with the objective of focussing on social and political issues. The membership of PAG consists of representation from both IBE an ILAE, thus working toward concerted actions, which, as we all know by experience, stand the best chance to success!
We are firm believers in concerted action on all levels on large and smaller scales, which is why we selected as the title for last time’s session: Concerted action for change. And we will continue to seek concerted action, also here, also today.
The purpose of the Resolution is to raise awareness about epilepsy among MEPs. Promoting the Resolution, however, should be a two-pronged effort approaching the MEPs in Brussels by the PAG and through the national epilepsy associations. Who could approach their MEPs locally to seek their support concerted action!
PAG is in the process of developing a European Epilepsy Day, however, this should be OUR day, thus we need YOUR input in shaping this – concerted action!
European Parliamentarians with an interest in epilepsy are being identified in order to try and raise awareness in the European Parliament – concerted action!
With the assistance of the European IBE and ILAE members/chapters we are hoping to undertake a survey to identify the level of epilepsy training provided during the full medical training period – concerted action!
With the help of the European IBE and ILAE members/chapters we would like to compile a list of European Epilepsy Centres with the aim to create a list of centres which could be used by people with epilepsy when travelling or by doctors who were treating people with epilepsy in countries where specialist treatment was limited or not available – concerted action!
PAG calls on all of you for more concerted actions for more change changes!
To download Reetta Kalviainen & Janet Mifsud’s presentation, please click here (776KB)
To download Hanneke De Boer’s presentation, please click here (312KB)
To download Michel Baulac’s presentation, please click here (3.06MB)
Training for Success Honor Broderick, Ireland
Brainwave, the Irish Epilepsy Association was concerned that a disproportionate number of people with epilepsy were unemployed or underemployed compared to people without the condition. The association felt that this is not always due to a lack of vocational skills alone but can also be due to psychosocial aspects such as low self esteem or a lack of self confidence.
Brainwave had been involved in the provision of vocational pre-employment training for several years. In 1998 it took the decision to set up a programme specifically designed to ameliorate the negative impact of epilepsy on education and employment. Training for Success was developed in partnership with the Institute of Technology Sligo. This was the first time in Ireland that a voluntary organization and a third level institution worked collaboratively to develop a course for a specific client group. In developing Training for Success, Brainwave has adopted a holistic approach. This programme aims to contribute to the aesthetic, creative, emotional, intellectual and physical development of its students. One hundred and fifty two people have participated to date. These students have come from both Ireland and abroad. The programme is funded through FAS the Irish vocational training authority.
The presentation outlines: The historical development of the programme; participant profile; aims and objectives; description of the course; typical progression for participants; questions and answers.
To download this presentation, please click here (1.44MB)
Working with politicians Peter Scott, UK
This session will examine how to ‘lobby’ politicians, and why it is important to move epilepsy up the health agenda. We will focus on:
- Why is it important to influence politicians?
- What messages connect with politicians?
- What can politicians do to help the epilepsy community?
We will also discuss the best methods of communicating with politicians to build a relationship, and how to work effectively with politicians to achieve our aims.
To download this presentation Brief, please click here (267KB)
Youth Session: Drugs, sex and life style choices – Stine Strømsø, Norway
Epilepsy is one of the most unpredictable diagnoses you can get. Especially young people who are diagnosed in their teens struggle immensely with issues regarding alcohol, love, friends and future possibilities.
I was diagnosed with epilepsy at age 17. The diagnosis and the challenges this led to have given me positive and negative experiences throughout my adult life. Now being an adult who work with young people and adults with epilepsy have given me unique experiences that I will share with the audience. Together with Nanette Mia Bohn who currently works as a consultant for the Norwegian Epilepsy Associations Youth Group well present some of the issues that young people with epilepsy deal with on an everyday basis as well as trying to conclude on how youngsters and their parents can deal with these issues.
Welcome to an inspiring, personal and informal session.
To download this presentation, please click here (8.80MB)