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The Italian League Against Epilepsy (LICE) and Italian Association Against Epilepsy - Veneto (AICE) have launched an initiative that aims to increase public understanding of epilepsy, with the hope that it will be replicated in other countries. What is more common than a carton of milk? With half a million people living with it, and 30,000 new cases found per year in Italy, epilepsy is a very common pathology. Yet it is seen as an obscure disease which should be hidden. This add to the stigma around it, which is hard to eradicate. This is not true for the Lattebusche dairy co-op, which from December 2018 to May 2019 will sell cartons of milk at all points of sale, displaying the 8 rules to follow in case of a seizure. The awareness campaign will reach out at least 1,5 million people. In addition, for International Epilepsy Day (February 11th), 300,000 Lattebusche cartons of milk will display the same rules on one side of the carton. The co-op will also print the rules in 100,000 flyers to be distributed until May. “Epilepsy is a disease with a lot of fear and skepticism around it”, states Sergio Giordani, major of Padua. “a completely [...]

To celebrate International Epilepsy Day 2019, we present the fourth video in our series featuring International Epilepsy Day mascot, Campi the seahorse. In this video, Campi meets a new friend- Stella Starfish, who also has epilepsy. Stella loves to play football but her team coach is not sure that it's safe for her to play. Watch the video to find out how she solves this problem, and what she and Campi learn about epilepsy and sports. This latest animation is part of a series of educational stories, specially suited to young children. Together with the videos, we are creating a teachers’ pack to help educators to use the tool in the classroom. First up is a page to colour in. You can watch more videos featuring Campi on International Epilepsy Day’s YouTube Channel here.

It was with great sadness that we learned of the passing of Augustine Mugarura, long-standing director of the Epilepsy Support Association Uganda (ESAU). Augustine led the IBE chapter in Uganda for many years, introducing projects to improve the quality of lives of people with epilepsy through training and education. RIP Augustine.

A caring short film on Epilepsy Nina, The Little Bulldozer is a short film that is part documentary, part animation. Through the words of Nadia and Thomas Davies (Nina's parents) the little girl comes to life and symbolizes the spirit of overcoming. This unique short film was created by a world class group of extremely talented individuals from Animation and Character Design Studios in Spain, France, Japan, and the US. The music was provided by a highly talented and esteemed musician from the San Francisco Bay area. Their individual names are listed in the credits section. In four and one-half minutes you will see epilepsy in a new light. This one of a kind short film simulates a seizure in an animated, artistic and compassionate manner. It is suitable for people of all ages. It portrays the courage and hope of a little girl that in spite of her illness never gives up and keeps going. She jumps over all obstacles in her way to reach her goal. This wonderful piece of art offers hope for all afflicted. All artists worked gratuitously to bring Nina’s story to life. It was done in the hope that this devastating neurological disease might be [...]

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