Epilepsy Information

Dear friends, colleagues and members of IBE, As most of you will understand, it is not always possible to keep up to date with psychosocial research in the field of epilepsy. In response to this we propose to provide a regular briefing document to highlight key findings from recently published research that are relevant to the conduct of the IBE and its members. The value of being aware of relevant research being conducted in the field can be considered as following: Giving us an understanding of applicable research on a regular basis. It may make us think differently about a particular topic. It can be used to support policy documents. It can help us identify areas where further research is required and thus support grant applications. It may help us avoid duplication of existing research. There are a number of key topics that we feel should be the subject of particular interest and these include the following: Self-management including education and knowledge; and the application of self-help strategies. Stigma interventions aimed at both people with epilepsy and the public. Discrimination against people with epilepsy in different life areas (eg. healthcare, education, occupation, insurance) Educational and occupational initiatives targeted at different sections [...]

An interactive toolkit and policy paper, focusing on improving the management of prolonged convulsive seizures for children in schools, were published in October 2017 by a multidisciplinary expert group consisting of clinical, patient and educational experts. The IBE was part of this expert group. Unlike most other seizures, prolonged convulsive seizures do not stop on their own and require emergency medication to prevent progression to a potentially life-threatening situation. This medication has to be given by a trained caregiver as quickly as possible as children are usually unconscious during these seizures. At school, this caregiver would typically be a teacher or other member of staff. However, many schools do not have appropriate policies and procedures in place to ensure that children can receive their medication safely and quickly. As a result, children are rushed to hospital, and potential delays in getting their medication may lead to severe health risks. As with many children with epilepsy, lack of understanding of their needs at school may lead to discrimination and social exclusion by their peers. The particular needs of this vulnerable group of children with epilepsy have so far received little attention by policymakers – and the policy paper and toolkit were developed [...]

Epilepsy is a neurological condition which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition. What are Seizures? Seizures seen in epilepsy are caused by disturbances in the electrical activity of the brain. The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. About epilepsy If you have epilepsy, it means you have had more than one epileptic seizure and could have more in the future. Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity. This is often referred to as epileptic activity. This intense electrical activity causes a temporary disruption to the way the brain normally works, meaning that the brain’s messages become mixed up. The result is an epileptic seizure. The brain is responsible for all the functions of your body. What you experience during a seizure will depend on where in your brain the epileptic activity begins and how widely and rapidly it spreads. For [...]

Epilepsy Research Priorities in Europe : On Behalf of Epilepsy Advocacy Europe Joint Task Force of ILAE and IBE in Europe (2009 - 2013) : Emilio Perucca, Mike Glynn, Michel Baulac, Hanneke de Boer, Christian Elger, Reetta Kälviäinen, Ann Little, Janet Mifsud, Asla Pitkänen Summary The European Forum on Epilepsy Research (ERF 2013) took place in Dublin from the 26th – 29th May 2013. It was designed to provide a platform on how to improve the lives of persons with epilepsy in Europe by influencing the future political agenda of the EU. The forum’s focus was to listen to the researchers and citizens of Europe involved in epilepsy-related issues either as patients or as healthcare providers. As an output, the ERF2013 defined objectives and milestones for the epilepsy community (1) how to strengthen epilepsy research, (2) how to reduce the treatment gap, and (3) how to reduce the burden and stigma of epilepsy. Background The European Forum on Epilepsy Research (ERF 2013) was an initiative of Epilepsy Advocacy Europe (EAE), a collaborative joint task force of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) (http://epilepsyadvocacyeurope.org). The Forum was co-funded by the European Commission’s 7th Framework Programme and [...]

Basic principles for Epilepsy Legislation sets out basic principles and rights that should be considered when drafting legislation related to epilepsy with due respect to given cultures or legal traditions. Read more click here to download this document

The IBE Research Task Force presented an interesting workshop at the 30th International Epilepsy Congress, which took place in Montreal in June 2013. The interactive session looked at successful research projects carried out by IBE members associations, how they were developed, how they were introduced and, more importantly, how they had succeeded. The aim was to encourage other associations, particularly those that did not normally undertake research initiatives, to consider instigating research activities by adapting for local use the examples showcased at the session. With the kind permission of the speakers, to which we would like to extend our thanks, we are pleased to be able to provide their PowerPoint presentations below. Speakers: (Click on image to download presentations) Christine Linehan (Ireland)“Researching the impact ofepilepsy with limited resources” Philip Lee (UK)"The influence of research" Ding Ding (China)"How to do research in a patient's association" Li, Min Li (Brazil)“Scientjournalist’ : a chimera for social transformation" Sarah Wilson (Australia)“Family functioning in people with medically refractory epilepsy” Members of the IBE Research Task Force (2009 - 2013): Ley Sander (Chair) – UK, Rosey Panelli (Acting Chair) – Australia, Malachy Bishop – USA, Pascalina Chanda – [...]

Epilepsy and Genetics Things You Want to Know Is epilepsy a genetic disorder?  Genetics is believed to play a role in most forms of epilepsy.  However, perhaps surprisingly, most people with epilepsy do not have any affected relatives. Current scientific evidence suggests that the role of genetics in epilepsy is complex – many genes with a small or modest effect on risk are likely involved – so that it is difficult to predict which people are at high risk.  In some unusual families, however, many people develop epilepsy, consistent with an effect of a mutation in a single gene with a strong effect on risk in the family.  Studies of these rare families have been very informative for identifying genes that cause epilepsy." Click to download the article Epilepsy & Genetics: Things you want to know. (This article is provided as a public educational service by the Genetics Commission of the International League Against Epilepsy).