Across Europe, many activities and events were held to mark European Epilepsy Day 2013.
From videos to art exhibitions, media interviews and reports, and also educational and informative talks – there were many varied and interesting happenings.
We will be adding more events from our members over the next few weeks, so please do return to view!
GPs, neurologists and patients and families came together to promote and discuss Epilepsy- its symptoms and treatment. In addition, the social and ethical effects of Epilepsy were addressed.
The topic for discussion was “Epilepsy, as seen from different points of view”. The talks were presented by Neurologist (Dr. Mijo), Paediatric Neurologist (Dr. Bushati) and Vice President (Mrs. Olloni) of the IBE Albanian Chapter.
Dr. Mijo, discussed Epidemiological study with respect to neurological diseases in Albania and its effects on epilepsy and seizures.
Dr. Bushati referred to the common forms of epilepsy in children and discussed the various types of treatments.
The Vice President of IBE Albanian chapter, Mrs. Olloni, spoke personally about epilepsy and the family. She spoke about her own son who has epilepsy and the effect it has on both him and their family.
After the presentation, greetings from Prof. Athanasios Covanis Chair of European Regional Executive Committee, IBE President Elect were read, as was the letter from Prof. Emilio Perucca, President-Elect, International League against Epilepsy, Co-Chair Epilepsy Advocacy Europe.
At the conclusion of the symposium, participants and guests had the opporunity to meet to discuss the day’s events and their own experiences.
Prof. Jera Kruja, President of Albanian League Against Epilepsy
Dr. Ilirjana Zekja, President of Albanian Society of Neurology
On 11 February 2013, Bulgaria celebrated the third European Epilepsy Day. The Association of Parents of Children with Epilepsy, together with the Epilepsy Foundation, the Centre for Epilepsy Surgery at the University Hospital “St. Ivan Rilski”, with the support of the Bulgarian Society of Neurosurgery organised a workshop discussion at the Auditorium of the St. Ivan Rilski Hospital.
Bulgaria’s Olympics shooting champion, patron of the ‘Other Side of Epilepsy’ campaign, Maria Grozdeva, announced the acquisition of one of the most advanced medical devices in epilepsy treatment, the Mikromed Evolution System, which allows simultaneous EEG recording 128 points on the surface of the head or directly from the brain surface during epilepsy surgery, purchased jointly by the Ministry of Health and the hospital. The system will be in operation at the surgical centre in the hospital which establishes it as the official epilepsy surgery centre in the country.
There are around 70 000 persons with epilepsy in Bulgaria, of whom approximately 14 000 are drug-resistant. The opening of the centre is an important breakthrough for the treatment of these patients. Among the guests at the event were representatives from the Health Ministry and NGOs, people with epilepsy and parents of children with epilepsy and national and local media.
"Bulgaria's first Center for surgical treatment of epilepsy was officially opened in the "St. Ivan Rilski "after seven years volunteer work." Read the article online ...
According to the World Health Organization, there are over 6 million people with epilepsy and each year, approximately 300,000 new cases are diagnosed.
Campaigning for employment of People With Epilepsy (PWE)
“Epilepsy and Employment” was the slogan of the European Epilepsy Day in Finland in 2013.
The Association raised many topics for discussion and debate. They spoke about: the many faces of epilepsy; the effects of epilepsy on ability to work and; how to distribute good practices to support employment. The knowledge that buy making a few adjustments in the workplace, people with epilepsy can be supported by rehabilitation and education. “If there is a will, there is a way!
People with epilepsy want to work and to contribute to society. As well as gaining work satisfaction, they wish to reap the entitled benefits such as a salary, having the opporuntity to become self-employed and also to be able to avail of a pension. Being in employment also provides the healthy aspect of social relationships and the benefits that these can bring to an individual.
The three parts of the campaign
The Finnish Epilepsy Association (FEA) are planning on launching a year long campaign that began on Epilepsy Day. There will be three parts to this campaign. Firstly, on European Epilepsy Day, the Association organised a national education day for professionals of public health care, employment agencies and pension insurance companies. The representatives of employers and self-employed were also invited. The objective of the day was to provide information about epilepsy and the various symptoms it may affect one's ability to work. In addition to that there was a training event for people with epilepsy, during which they discussed the theme “Epilepsy and Employment” which included presentations from people with epilepsy about their own individual experiences in working life.
The event was broadcast directly via internet.
View video of event:
Secondly, from the end of January a special website and Facebook page was launched to provide information, interactive activities, videos and stories.
Thirdly, the local chapters of the Finnish Epilepsy Association organised awareness events in public areas such as cafes and markets. These events and activities will take place during the whole year around the country: from capital Helsinki to the Baltic Sea coast to Lapland and to the arctic villages. These platforms are open for anybody and new volunteers are actively being recruited to take part.
Co-operation and the media
Following a press release by the Finnish Epilepsy Association and the media reported on the theme and the Association’s activities, including the European theme “No seizures, no side effects”. The Finnish campaign is a part of an employment project which is funded by a government grant. They have collaborated also with the Finnish Epilepsy Society to gain more expertise in this type of campaign.
Work and epilepsy
There is still lack of appropriate information about effects of epilepsy on ability to work. Although knowing that epilepsy is more than just seizures, it is unclear for many people how epilepsy effects individuals on a cognitive, psychological and social level. Even though there are few professions that are not permissible for people with epilepsy, there are still many myths that prevent people with epilepsy from working. For example, there is in some circles, a belief that night shifts are forbidden even though this is not always the case. Risk analysis in the working environment should be evaluated individually by professionals. For these reasons a specialised campaign for the employment of people with epilepsy is required. This is the Finnish European Epilepsy Day campaign 2013 which will continue throughout the year.
Epilepsy Ireland generated tremendous coverage of epilepsy in local and national media in order to raise awareness, focusing on the results of a survey of 1,000 members of the public about their knowledge and attitude to epilepsy.
Brainwave The Irish Epilepsy Association became Epilepsy Ireland.
While their name is changed, their vision “to achieve a society where no person’s life is limited by epilepsy” remains at the heart of everything that they do. They are still committed to meeting the needs of individuals in Ireland with epilepsy and supporting their families and carers, as they have been doing since 1966.
The new logo still contains an updated version of the light bulb image used for many years. The light bulb represents the idea of “shining a light on epilepsy”, a theme that is used by many epilepsy organisations around the world. Please visit their revised website for further details www.epilepsy.ie
Epilepsy Ireland ran series of radio ads highlighting EED – you can listen to the adverts below. The adverts were voiced by Rick O’Shea – radio presenter of the Irish national radio station 2FM. Rick has been the National patron of Epilepsy Ireland since 2006.
Rose of Tralee Nicola McEvoy is pictured with little rose buds, twins Hannah and Emma Boughton (age 6) from Rush at the launch of Epilepsy Ireland St Valentine’s Rose Appeal and the introduction of the new name Epilepsy Ireland.
2FM presenter Rick O’Shea speaks about his own experiences
The Dutch Epilepsy Foundation, the Dutch League Against Epilepsy, and the epilepsy centres SEIN and Kempenhaeghe sounded the gong to mark European Epilepsy Day 2013, and highlight the impact of the disease on those affected by it.
NYSE Euronext Amsterdam
Miryanna van Reeden, actress and ambassador for the Dutch Epilepsy Foundation sounded the gong on behalf of the Dutch Epilepsy Foundation this year for European Epilepsy Day. Miryanna said the following about the epilepsy: “What I find so devastating is the unpredictability of the disease. People who have epilepsy can have a seizure at any time. This has a huge affect on their daily lives, and I find it heart rending. One would think that modern medicine could find a solution for this. The fight against epilepsy deserves more attention.”
Watch the video
The Slovenian League Against Epilepsy produced a wonderful video which was broadcast on national television in Slovenia.
This video is short and simple, but very, very effective:
“Epilepsi – uten ord” (“Epilepsy – Without Words”)
Inspired by IBE’s photo contest “Epilepsy – Without Words”, the Norwegian Epilepsy Association arranged a national photo contest in 2012 with the title “Epilepsi – uten ord”. The competition was arranged in association with the Norwegian photo magazine, Fotografi, who both announced the competition and formed a professional judging panel.
During 2012 a total of 105 photos were submitted, and the four best images was announced in November. The judging panel was impressed by the quality of the submitted photos and The Norwegian Epilepsy Association soon decided to use the results of the competition to mark European Epilepsy Day in February. A total of thirty entries were chosen to form an outdoor photo exhibition on one of the main streets in the capital of Norway, Oslo. The exhibition was on display for two weeks, after the official opening on European Epilepsy Day. Throughout EED day, actors promoted the exhibition by getting people’s attention as they simulated seizures in the surrounding area, and by handing out leaflets with information. All visitors to the exhibition could win a free photo from the exhibition by answering an easy question via the Association’s website. The exhibition was covered by the media and many people were reached by this event. A success, that calls for repetition!
To mark National Epilepsy Day – proclaimed in 2011, on behalf of the Ministry of Health on the initiative of Epilepsy Association, Doctors for support – Serbia, the Association collaborated with its partners, to perform a humanitarian play “Forest charms” for the children from the Clinic for Neurology and Psychiatry, and invited guests. Educational material was handed out in addition to treats such as sweet packages, juices and balloons.
Over 100 people, including children who suffer from epilepsy, their parents, medical professionals and epilepsy supporters gathered in the Clinic’s Amphitheatre at the Epilepsy Association. The speakers were: renowned Prof Aneta Lakic, Director of the Clinic for Neurology and Psychiatry for Children and Youth, Dr Simo Vukovic, State Secretary for Health – whom both showed their support to the Association and to the patients and their families, and the Association’s President, Dr Biljana Kohen.
After the show, dressed actors in costumes of forest animals and Association members shared in the treats of sweets, juices, homemade cakes and balloons with the children while the adults had a chance to talk about the topics of this events (Epilepsy and Sport). Video games and First aid during an epileptic seizure were all part of the activites. Actors and Epilepsy Association members visited the children who were patients at the clinic but unable to attend the show, sharing sweet treats and balloons with them.
One of the attendees has said about the event “It has filled me with joy to see how much these children enjoyed themselves, it has been a while since I have seen so much sincere happiness! Congratulations on all that joy! Really, way to go! I will always attend these kinds of future events!” while one of the present parents wrote to us “Wonderful day spent at the Clinic for Neurology and Psychiatry for Children and Youth where National Epilepsy day was marked with joy with a theatre play Forest charms which put smiles not only on the faces of my children but as well all children present at the unit. IS THERE ANYTHING BETTER?!”
The event was fully covered in the media and has helped slowly gain media attention to the cause and the Association.
Epilepsy Association – Doctors for support, Serbia thanks all their partners for their support and looks forward to future similar events.