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.”