Photo above: Asla Pitkänen, Georg Thoma, MEP Gay Mitchell, Jérôme Bech

European Parliament hears compelling stories of athletes who complete at international level in spite of a diagnosis of epilepsy

“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’.”

Thus Emma Beamish began a personal, moving and, at times, amusing accountof living with epilepsy. The venue was the European Parliament in Brussels and Emma was one of three international sports people who also happen to have been diagnosed with epilepsy.

The Roundtable event, which took place on 29th November in Brussels, had been organised jointly by the European Advocates for Epilepsy special interest group of MEPs (Members of the European Parliament) and the IBE/ILAE Joint Task Force Epilepsy Advocacy Europe. Hosting the event was Mrs Angelika Werthmann, an Austrian MEP, who is a member of the European Advocates for Epilepsy Group.

Photo above: MEP Mrs Angelika Werthmann, who hosted the Roundtable event in the European Parliament in Brussels.

Emma Beamish, Ireland, is an Irish International Cricketer who has represented Ireland at the highest level, participating in the 2005 Cricket World Cup in South Africa. She was a member of the Irish team that won the European Championships and the European 20-20 Championships.

She is now a level 2 cricket coach, and about to become a level 2 hockey coach.

Her latest sport is Kick Boxing. She is currently studying at Queen’s University, Belfast, to become a teacher. On the day Emma spoke in the parliament she was also celebrating her 29th birthday. Emma’s passion in life is sport and she told us that nothing had ever come between her and her sports. Her parents had provided fantastic support to her, that allowed her to have a life the same as everyone else: “They set the tone; I never knew anything was wrong. I was lucky that my parents provided a support that I didn’t know existed. There was a net there. But this is a condition where you cannot wrap people up in cotton wool.

It is very lonely dealing with something that no one can explain to you. This is why I call it the ‘dark arts’. It’s there but you can’t see it until it’s too late.

“I started with small goals; I would walk the dog every day. He did very well out of this arrangement”

Emma talked openly about periods of anger and fear, of frustration and depression. But she also talked about how she found her way back into life thanks to the daily step by step goals she set herself: “My epilepsy has never held me back it’s just made things a little bit tougher, but then nothing worth it was ever easy.

Emma 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 directly 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.

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

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 ungoing 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.

Jérôme Becher, Germany, holds the Guiness world record for the longest uninterrupted swim (80km) as well as the European record in 24-hour swimming.

Aged 32 years, he is a physical therapist by profession, and runs his own rehabilitation centre. He has 22-year record of semiprofessional competition in swimming, marathon running and triathlons.

Until he was 10 years old, Jérôme lived the life of a normal boy with a great passion for sports: “I had my first seizure in April 1989 – I was ten and I still remember it very clearly. It was a Monday and my brother and I were on our way to swimming practice. Life changed completely that afternoon: “My doctor told me that any physical exercise was out of the question and especially forbade me any sort of endurance sports!”

After his diagnossis of epilepsy, with the great support of his parents, Jérôme continued with his sports activities, and began to set himself bigger and greater sporting goals – although his neurologist was kept in the dark!

“My mother accompanied me to every practice. I swam more and longer distances; I ran more and longer distances. The one thing we didn’t do was to tell my neurologist about my sporting efforts.”

He has run 15 marathons, with a fastest time of 3 hours and 8 seconds. He took up running as a ‘compensation sport’ for his more intensive swimming: “I started to do open water competitions, which are held in lakes in Germany due to lack of open sea. I started winning 5km and 10km events, won some German championships and simply enjoyed my life without having epilepsy handicap me. At this point, of course, there was no more hiding my secret activities from my neurologist! It helps of course if you can present some solid results that the sport was not aggravating my condition but instead stabilizing me.

“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 the 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.”

Today Jérôme 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 motivaton to live all aspects of his life with more awareness: “That’s why I have become an ambassador to bring more selfconfidence 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.

“Standing here in this special place is the very proof that epilepsy is something we ought to talk about and accept and to give everybody the chance to live their life without fear or discrimination. It is our task to bring those people hope and support. We can show them that epilepsy is the last reason why they shouldn’t live a rich and satisfying life.”

Dr Asla Pitkänen, Finland, is Professor of Neurobiology at the University of Eastern Finland and Secretary of 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 the chronic diseases constitute in general and in particular the economic and social burden of epilepsy. While 25 different epilepsy genes have been identied 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 Louise 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 following – yes you’ve guessed it – a sports injury!