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The global fight against epilepsy

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ERI

UK research, global reach The global fight against epilepsy

Date Published: February 8, 2023

Author: James Matejka

65 million people across the world have been diagnosed with epilepsy. Each person faces their own challenges, which vary greatly depending on where they live. On Monday 13th February, we’ll be joining our global partners in celebrating International #EpilepsyDay – a special event promoting global awareness of epilepsy. Throughout the month on the Research Blog, we’re looking at how collaborations across borders – in research and in policy – will one day help our global epilepsy community live without seizures.

“I woke up on the floor with a semi-circle of faces looking down at me,” Marion says. “I couldn’t remember my name or where I lived, but I knew I knew the answers.” After this first seizure at 22 years old, Marion was diagnosed with epilepsy, and was told, “I shouldn‘t go out alone, partake in any sports, or talk to anyone about having epilepsy, because it was so taboo.”

When her driver’s license was suspended, she bought a bike to travel the 30km to and from work every day. This began a love affair with cycling, which eventually led to Marion Clignet winning gold, silver, and bronze medal at the US national road championships in 1990, and qualifying for the US world championship squad. But her cycling career looked like it might come to an end when she was told that her epilepsy could make her a risk to the team.

Marion is one of the 65 million people across the world with a known epilepsy diagnosis, facing their own challenges that this condition brings. The risk of premature death in people with epilepsy is up to three times higher than for the general population. Yet with the right diagnosis and treatment, 70% of people could live seizure-free.

People with epilepsy around the world come up against barriers to obtaining a diagnosis, poor access to treatments, and discrimination. Epilepsy is a global problem, but with determination and focus, we know it is possible for everyone to have a chance of a life free from seizures.

The research supported by Epilepsy Research UK may take place in the UK but it’s reach is global. Many of our researchers work jointly on projects with international collaborators, including Professor Andy Trevelyan from Newcastle University. He is working with Dr Xavier Leinekugel from Aix-Marseille University in France to develop a new method to study epilepsy in mice, which will be less invasive and more efficient.. Later this month on the Research Blog, Andy will share an update on the project, and give an insight into the shared benefits of international collaborations.

We want to foster more international collaborations like Andy and Xavier’s. That’s why Epilepsy Research UK brings people together at events like our International Expert Workshops and our new Navigator Symposium Series. These workshops allow scientists from across the world to discuss the latest research, share knowledge, and spark ideas to tackle the big challenges in epilepsy.

But to truly address the needs of everyone with epilepsy around the world, we need a coordinated global effort. The Intersectoral Global Action Plan (IGAP) for epilepsy and other neurological conditions – published by the World Health Organisation (WHO) – is one of the most significant recent developments in the global fight against epilepsy. After it was unanimously approved last year, governments around the world are now compelled to respond to the IGAP’s recommendations, which include raising awareness, improving access to treatments, and preventing epilepsy.

On the Research Blog later this month, Professor Arjune Sen, Consultant Neurologist at The John Radcliffe Hospital, will discuss the international process of the WHO IGAP, the next steps for collaboratively implementing its recommendations, and the particular challenges faced in low and middle-income countries.

Marion was not put off by being told she could not compete for the US cycling team. With her dual nationality, she was able to compete for the French team instead and went on to win Olympic medals and become a French World Cycling Champion.

Marion has supported many epilepsy charities over the years. For her, part of the reason for supporting research is personal: “I believe that one day, research will discover what mysteriously caused me to start having seizures at the age of 22, like so many other people who have idiopathic epilepsy,” she says. Next week on the Research Blog, Marion will share more about her story of epilepsy and cycling triumph (as well as some tips for people taking part in RideLondon 2023!).

With investment, a coordinated focus, and the global epilepsy community working together, radical change can happen. To read more about our efforts to radically advance research into epilepsy through investment, collaboration and action, visit the #Every1EndingEpilepsy programme page on our website.

Keep an eye on the Research Blog throughout February, when Marion, Andy, and Arjune will share their views on the global impact of epilepsy.

P.S. Speaking of international collaborations, why not revisit the story of Cronut the Sealion, who has been seizure-free thanks to life changing research here.