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Edmund Cheong Heng Yew wins competition by sharing his mother's story of epilepsy "Malaysia Day" falls on the 16th of September. Each year, many events are organised to celebrate this patriotic and joyous day. This year, International supermarket chain Tesco, organised a story sharing contest with six prizes of shopping vouchers worth RM5,000.00 for each of the selected winners. Contestants were required to write about the people they look up to and why they regard them as their heroes. Edmund Cheong Heng Yew wrote about his mother, Serene Low, and shared her epilepsy story. “Both of us were immensely overjoyed and taken by great surprise as we didn't think our entry would stand a chance to win at all since competition was very stiff with lots of other entries submitted”, said Serene. Serene is a former recipient of the IBE’s Outstanding Person with Epilepsy Award, presented at the 10th Asian and Oceanian Epilepsy Congress in 2014, for her ongoing advocacy work Serene wrote to Ann Little, Executive Director of IBE with gracious thanks for the part the organization has played in promoting Serene’s story: “Thanks so much, Ann, for giving my Malaysian epilepsy story a chance to appear in the International [...]

In celebration of World Brain Day 2018, the European Federation of Neurological Associations (EFNA) has released results of its recent Survey of Young Europeans with Neurological Conditions: www.efna.net/efnayoungpeoplesurvey/ Between March 12th and May 15th 2018, 1368 responses to the survey were received from 39 countries. Respondents were aged between 18 - 35 years. Almost 80% of the respondents were female, with the majority of the responses coming from the below disease areas: Multiple Sclerosis Myalgic Encephalomyelitis Chronic Pain Migraine Epilepsy The top concern cited by respondents was ‘access to medication/treatment’, followed closely by ‘isolation’ and ‘stigma’. This isolation and stigma could be attributed to the lack of public understanding of brain disorders. For young people living with epilepsy, however, the major concern is 'access to employment'. 37% of respondents affected by epilepsy are working full-time, a slightly higher figure than the rate for neurological disorders as a whole (33%). 20% of respondents have obtained a Bachelor's Degree, in-keeping with results for other brain disorders. The highest co-morbidity seen was in migraine, which affects over 13% of respondents living with epilepsy. Overall, respondents rated understanding of both brain disorders and their own conditions at just 2.5/10. A lack of understanding was also [...]

The 12th Asian & Oceanian Epilepsy Congress took place in Bali from June 28 to July 1, 2018. Below are a selection of photographs taken over the course of the event. You can see a complete album of images in our Facebook album here. You can visit the official Conference Website here.  

The Epilepsy & Society Symposium was held yesterday (July 1st) in Bali, alongside the 12th Asian and Oceanian Epilepsy Congress. An exciting programme of great interest to both individuals living with epilepsy and for staff from community organizations supporting people living with epilepsy was been developed by local and regional committees of the International Bureau for Epilepsy (IBE). Dr Anna Sinardja spoke about epilepsy and stigma; telling how epilepsy is called ‘dead goat’ and ‘crazy pig’ in some regions. Traditional healers are still used extensively in the region, with epilepsy being considered by them to be caused by spirits or by body temperatures that are too low or too high. The norm is for a person with seizures to attend a traditional healer for four years before going to medical doctor. A medical doctor who lives with epilepsy explained that even she went to a traditional healer at first, due to family pressure. Left: Kadek Kanjani, doctor with epilepsy. Right: Purwa Gde Samatra Dr Tsai, from Taiwan, poses a question to the speakers panel.                 A panel of speakers from Indonesia reported on living with epilepsy in Indonesia, discussing various [...]

On Thursday, June 28th, winners of the IBE Golden Light Awards were announced  in Bali and presented during the opening ceremony of the 12th Asian & Oceanian Epilepsy Congress. The title of the award was changed to Golden Light Awards in 2016 to recognise that people with epilepsy are not defined by their condition and to embrace the IBE's call to ‘bring epilepsy out of the shadows and into the light’. For 2018, the awards focus on young people, with all candidates being under the age of 40. The winners are: Ern-Chun Hong (Taiwan), Shuorong Huang (China) and Katherine Height (Australia). Congratulations to all! Ern-Chun and Shuorong both live with epilepsy, while Katherine is mother of a child affected by severe epilepsy. Ern-Chun, Katherine and Shu Li will share their stories with delegates attending the Epilepsy & Society Symposium on Sunday, 1st July.

„Epilepsie aktiv leben – Anfälle erkennen, beraten und behandeln“ An event (German language) will take place during the European Congress on Epileptology in Vienna in September. The patient forum will see experts serve to inform the population about epilepsy, followed by an open Q&A session. Self-help groups and associations will present their activities and are available for the exchange of information and experience for those affected and relatives. PARTICIPATION IS FREE OF CHARGE More information Download flyer here  

Around 50 million people worldwide suffer from epilepsy, making it one of the most common neurological diseases. To decrease this figure and pave the way for future ground-breaking epilepsy research, seven large EU-funded projects have joined forces. epiXchange 2018 is a unique global community building event, designed to gather a critical mass of epilepsy researchers to exchange about latest progress in research aiming to improve the way epilepsy is diagnosed and treated and thereby increase the quality of life of affected people. Six of these projects were funded through the 7th Framework Programme (FP7) which provided total funding of EUR 52 million. Despite a great progress in the management of epilepsy, 30-40% of epilepsy patients are refractory to all available medications. Moreover, about 50% of children with epilepsy suffer from epilepsy-related co-morbidities, including developmental delay, learning disabilities, and autism spectrum disorder. Diagnostics is another issue. ‘Diagnosis of epilepsy is really difficult,’ explained Prof. David Henshall, coordinator of the epiXchange 2018 co-organising EpimiRNA project. ‘Seizures are the main clinical symptom for the disease but it is very rare that a doctor will witness the patient having a seizure.’ New innovative solutions to diagnose and treat epilepsy As published in HORIZON – The [...]

The 10th Latin American Congress on Epilepsy will take place in San Jose, Costa Rica from September 29th to 2nd October 2018. This biennial meeting, which is a joint collaboration of the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), affords delegates a unique opportunity for face to face interaction with the finest minds in the field. It also allows delegates to gain insight into the latest research and to get in touch with the many colleagues from the region. The call for session proposals is now open and more information is available on the official congress website.

The European Medicines Agency’s experts in medicines safety, the Pharmacovigilance Risk Assessment Committee (PRAC) are recommending new measures to avoid exposure of babies to valproate medicines in the womb. Babies exposed are at risk of malformations and developmental problems. This follows a public consultation that took place recently at the EMA offices in London with IBE participating. Representing IBE were Martin Brodie, President who made an oral presentation, and Caroline Morton, Vice President Europe. For people with epilepsy, the main recommendations are as follows: Valproate must not be used where the patient is pregnant. However, it was recognised that for some women with epilepsy it may not be possible to stop valproate and they may have to continue treatment (with appropriate specialist care) in pregnancy. In female patients, from the time they become able to have children, valproate must not be used unless the conditions of the new pregnancy prevention programme are met. The PRAC has also recommended that the outer packaging of all valproate medicines must include a visual warning about the risks in pregnancy. In addition to boxed text, this may include a symbol/pictogram, with the details to be adapted at national level. A patient reminder card will also [...]