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European Epilepsy Day in the European Parliament

ILAE President Emilio Perucca and IBE President Mike Glynn meet with MEPs in the European Parliament in Strasbourg for European Epilepsy Day.

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14 th FEBRUARY – NOT ONLY VALENTINE`S DAY

You do not have to love them. It is enough if you notice them…

14th February is not only Valentine’s Day, but also European Epilepsy Day.

Saint Valentine is the patron saint of people with epilepsy.

‘Notice me’ is the national campaign of different associations for people with epilepsy from throughout Poland.

It was launched on 14th 2009 in the form of an event in Warsaw.

The campaign has been joined by the following associations:

  • Polish Association of People Suffering from Epilepsy division in Sławno – the main author and organizer of the campaign,
  • Polish Association of People Suffering from Epilepsy division in Lublin,
  • Association of people with epilepsy and their friends “Spokojna głowa” from Warsaw,
  • Ola Leśniewska Foundation from Piaseczno,
  • Support group Epi from Łódź,
  • Epilepsy Association from Gdańsk,
  • Association of People with Epilepsy and their friends “Piast’ from Gdańsk
  • Association of People with Epilepsy and a Disability and their friends “Koniczynka” from Poznań,
  • TacyJakJa.pl- social portal for the people with chronic diseases

Since 2009, always on 14 February, the Day of People with Epilepsy, the associations mentioned above organize events. They are represented by people with epilepsy, their family members and friends. During these activities special ‘Valentine cards’ are distributed, that include information about epilepsy. If you want, you can also receive special ‘Valentine’ stickers, which are a symbol of solidarity with people with epilepsy. It is our goal that all the leaflets stand out from Valentine decorations. We want to ‘send’ to society a special ‘Valentine’s card’- the information about the day of people with epilepsy.

The aim of the campaign is to draw the attention of society and the mass media to the needs of people who suffer from epilepsy. We want to make everybody aware of the fact that people with epilepsy need to be understood and accepted. Another goal is to educate people on how to behave when you witness a seizure. A lot of people are still unaware of the symptoms and do not know how to react in such a situation. Due to uncontrolled seizures and lack of public understanding, a large number of people with epilepsy and their carers are forced to resign from their studies, jobs, family, and dreams..

Our campaign (which thanks to the help of several institutions, companies and ordinary people, is growing), shows that people with epilepsy are able to a lead normal social life if they feel accepted and properly treated.

In 2010, to make our campaign more visible to the public, we launched new actions -promotional spots shown in Multikino cinemas, preparing the website http://zauwazmnie.org./ and shooting an educational film.

In 2011 the campaign gained the new event – Nordic Walking march. The motto of the march was “Notice me – walk healthy”. The people with epilepsy, their families and friends as well as many people who identify themselves with the idea of the campaign, took part in the event.

The participants set off on 14th February from Sławno to reach the finish on 26th February in Warsaw, after covering 460 kilometres. In every town on our route we tried to make people interested in our campaign and invited inhabitants to join us – at least by walking in their town.

In 2012 ‘Notice me’ campaign will be also strongly connected with Nordic Walking march. The slogan is the same too : ‘Notice me. Walk healthy.” This year, the participants will have to cover a 400-kilometre distance from Częstochowa to Grudziądz . People with epilepsy, as well as people who want to draw attention to the needs of peole with epilepsy will take part in the march. During two weeks they will visit about 13 towns where they will carry out educational campaigns outdoors. The aim is to enhance all the Nordic Walking lovers to join the march. The final will take place in Grudziądz on 25th February.

This year’s campaign “Notice me. Walk healthy” has been organized for the fourth time and the Nordic Walking march – for the second time. The press and television are becoming more and more interested in each subsequent year. TV coverage has been shown in the main news programmes: Wiadomości, Teleexpress, Info Dziennik and Panorama. Thanks to such thorough publicity, the people with epilepsy were helped. This year, like always, we are also planning a wide information campaign.

We invite everybody to join our initiative.

Campaign Organizer

Jadwiga Grochowalska

President of the District Division of the Polish Association of People Suffering from Epilepsy in Sławno

European Epilepsy Day – 13th February 2012

European Epilepsy Day 2011 - Georgia

The passing of a Written Declaration on Epilepsy, September 2011, highlighted the need for increased research funding for epilepsy. Now we are hoping for specific calls for epilepsy research from the FP7 budget, support for conferences, and funding from DG Sanco for 2013.

However, with the burden cost of epilepsy in Europe standing at €20 billion annually, we cannot be complacent. We must ensure that epilepsy remains at the top of the agenda.

The fact that 6 million people in Europe suffer from this disease; that 300,000 new cases are diagnosed each year; and that SUDEP (Sudden Unexpected Death in EPilepsy) is responsible for 33,000 deaths in Europe annually; should be testament to the EU of the need to improve health awareness and research funding for epilepsy.

With your help, we can reduce the stigma associated with epilepsy; we can improve the lives of 6 million people; and we can work towards a cure for this chronic disease. We therefore call on you, as Members of the European Parliament, together with the Council and the Commission, to increase funding for epilepsy research and awareness initiatives in 2012.

Please join us!

Epilepsy Without Words Photographic Exhibition

to celebrate European Epilepsy Day 2012

Date: 14 February 2012

Time: 17:30

Venue: Swan Bar Exhibition Area

European Epilepsy Day is organised by Epilepsy Advocacy Europe Task Force, European Advocates for Epilepsy MEP special interest group, and by national epilepsy associations across Europe. 

Epilepsy Advocacy Europe (EAE): Epilepsy Advocacy Europe is a Joint Task Force of the International League Against Epilepsy (ILAE) and the International Bureau of Epilepsy (IBE) for the facilitation of initiatives to enhance public awareness and support to research in epilepsy in Europe. EAE seeks to make epilepsy a priority in political and research establishments across Europe.

International League Against Epilepsy (ILAE): ILAE is the leading association of physicians and other health professionals working towards a world where no persons’ life is limited by epilepsy. Its mission is to ensure that health professionals, patients and their care providers, governments, and the public have the educational and research resources that are essential in understanding, diagnosing and treating persons with epilepsy.

International Bureau for Epilepsy (IBE): IBE is an international umbrella organisation of national organisations representing people with epilepsy worldwide. IBE was founded in 1961 to improve the social condition and quality of life of people with epilepsy. By working to increase awareness, understanding and knowledge of epilepsy, IBE aims to meet the needs of people with epilepsy as well as those who care for them.

European Advocates for Epilepsy Working Group: is a group of cross-party, cross-national MEPs with particular interest in epilepsy. The group aims to improve the quality of life of all people with epilepsy, their families, care-givers and healthcare providers through European Union (EU) policy. This is achieved by providing a network for the exchange of experience, information and data on epilepsy between all interested stakeholders.

Newsletter – January 2012

The first Epilepsy Advocacy Europe newsletter is available here.

Included in the newsletter is a welcome from the Co-Chairs, Mike Glynn and Emilio Perucca; recent developments from the Written Declaration on Epilepsy; a summary of the Epilepsy and Sport Meeting in the European Parliament; and information on European Epilepsy Day 2012.

 

Quotes from the Discussion on Epilepsy and Sport

Dr Asla Pitkänen, Finland, is Professor of Neurobiology at the University of Eastern Finland and Secretary of IBE/ILAE Epilepsy Advocacy Europe task force. She is also a member of the ILAE Commission on European Affairs.

Following the speeches of the three sportspeople, Dr Pitkänen presented on the medical aspects of epilepsy, the enormous burden that chronic diseases constitute in general and in particular the economic and social burden of epilepsy. While 25 different epilepsy genes have been identified and despite the high number of anti-epileptic drugs available, up to 40% of people with epilepsy will still have seizures. There is still no cure for epilepsy. Because of this, Dr Pitkänen emphasized the necessity to expand epilepsy research in order to close the huge diagnostic gaps, to reduce side effects of medication and to work towards a situation where everyone with epilepsy will have, at least, total seizure control or, at best, a cure.

Mike Glynn, Ireland is IBE President, Co-chair of the IBE/ILAE Epilepsy Advocacy Europe task force and Chief Executive Officer of Brainwave The Irish Epilepsy Association.

Mr Glynn referred to a number of international rugby players who have epilepsy, including former Scottish player Tom Smith, who is now a rugby coach. In his view, parents must encourage their children to become involved in sports, despite the diagnosis of epilepsy.

Helping a child with epilepsy to live as normal a life as possible, including playing sports with their peers, is important for two reasons – firstly in helping the child with epilepsy to develop self-confidence and self worth and, secondly, to send a clear signal to the general public that most people with epilepsy are no different from anyone else, apart from a diagnosis of epilepsy, and that epilepsy is not something to be hidden from view.

In addition to Mrs Werthmann, other MEPs who attended the event included Irish MEP Gay Mitchell, who is President of the European Advocates for Epilepsy Group; fellow Irish MEP Sean Kelly, who also spoke at the International Epilepsy Congress in Rome at the end of August; and French MEP Nathalie Griesbeck, a member of the European Advocates for Epilepsy Group. A number of MEP’s Assistants were also present.

Several people travelled long distances to attend the roundtable event in Brussels, either representing epilepsy associations or because of a personal interest in Epilepsy. The Hungarian IBE and ILAE associations were represented by Dr Judit Jerney, while Dr Janet Mifsud who is a member of the joint task force is from Malta. The furthest distance was travelled by Claudia Schlesinger, Chief Executive of Enlighten Hong Kong! Not only had she travelled all the way from Hong Kong, she had also done so with her foot in plaster due to – yes you’ve guessed it – a sports injury!

Emma Beamish explained how her entire lifestyle had to change to allow her to compete at the top level in sports. She realised that she needed at least eight hours sleep each night, to eat a healthy diet, and to avoid stress. She also had to ensure that she took her medication as directed to keep her ‘on the straight and narrow’: “I get little reminders every now and again if I don’t keep to the path,” she explained.

Her request to society is for openness: to stop speaking about epilepsy quietly in corners and to start speaking openly about the condition. Emma believes that this is the only way to make it ‘normal’ to have epilepsy and by speaking openly, the ripple effect could be tremendous.

“I hope I can provide a little insight and perhaps a little of my understanding of epilepsy or, in Harry Potter terms, the ‘dark arts’.”

“I started with small goals; I believe my first goal was that I would walk the dog every day. He did very well out of this arrangement!”

Georg Thoma, Germany, is a marathon runner, who has run all over the world and has even run a marathon along the Great Wall of China. He undertakes distance races for charity, including a 630km long charity run across Germany.

In his presentation, Georg talked about how he was very frightened before undergoing brain surgery, thinking how his head would be cut open. Now he is delighted that he had the surgery as it has allowed him, finally, to achieve a seizure-free life.

Georg told how he had realised lifelong dreams and, like Emma, he also pointed out the need to ‘open the eyes’ of society about the true facts on epilepsy.

“My doctor told me that any physical exercise was out of the question and especially forbade any sort of endurance sports!”

Jérôme Becher is committed to improving the situation for people with epilepsy, by increasing public awareness. He explained that people might have the false impression that epilepsy isn’t a severe disease because they can see that he is in perfect control of his life. However, he adds that this is because he has found the self-confidence and support to accept his condition and to generate motivation to live all aspects of his life with more awareness: “That’s why I have become an ambassador to bring more self-confidence to people with epilepsy and those close to them, to people who are not open enough to talk about it, who are even ashamed of their condition, people that don’t get the support they need.

Having a seizure at 2 kilometers offshore creates a somewhat more difficult problem then collapsing during a marathon on solid ground

“I never think about the problems with epilepsy during races. It’s before each race that I have to ask myself if I can do it without risking my health. And swimming isn’t the most preferred sport in neuroscience – having a seizure at 2km offshore creates a somewhat more difficult problem then collapsing during a marathon on solid ground.”

 

Discussion on Epilepsy and Sport

MEP Angelika Werthmann chairing the discussion.

MEP Nathalie Griesbeck with Jerome Becher

MEP Gay Mitchell with Asla Pitkainen, Georg Thoma, Jerome Becher, Emma Beamish and Mike Glynn.

MEP Sean Kelly meets the attendees.

Emma Beamish

Emma Beamish is an Irish International Cricketer who has represented Ireland at the highest level, participating in the 2005 Cricket World Cup in South Africa.

On Tuesday 29th November, Emma Beamish will be 29 years old and to celebrate, she will be speaking at the Discussion on Epilepsy and Sport in the European Parliament in Brussels!

Emma has epilepsy and had her first seizure aged 14. From the age of 17, for seven years, Emma remained seizure free but in 2006 her seizures returned, due to a culmination of stress and tiredness.

Emma has never let epilepsy stop her achieving her goals one of which is cricket. Sport has always played a large part in Emma’s life and she has spoken at length of the commitment and sacrifices it takes to make it to the highest level.

Emma has taken part in a documentary series on her life on Ireland’s National Broadcaster, RTE, which examined how Emma learnt to live with epilepsy. We are delighted that Emma has agreed to participate in our discussion on the 29th November and are certain that she will contribute to a fruitful discussion.