Istanbul has long been recognised as a crossroads of culture, learning and trade. Its position on the ancient Silk Road made it historically significant in opening up communication channels between civilisations from as far afield as China, Africa, Arabia and Europe.

So it seemed fitting that the city should have been chosen as the location for the 31st International Epilepsy Congress (IEC) – the first major international epilepsy event to take place following the approval of the resolution of the Global Burden of Epilepsy by the World Health Assembly in May of 2015.

The resolution called for countries around the world to make epilepsy a priority. It called on healthcare professionals, lay stake holders and policymakers to improve epilepsy care, promote research and disseminate knowledge and understanding of the condition.

Istanbul’s IEC, organised by the International League Against Epilepsy and the International Bureau for Epilepsy, ticked every pill box, a prescription for a rich interchange of hopes, frustrations, advances and question marks on an international platform.

Genetic research into epilepsy is presenting hope and frustration in equal measures. Professor Sanjay Sisodiya from University College London Institute of Neurology and director of clinical genetics at Epilepsy Society presented the case of a patient who spoke for the first time in 15 years after a genetic diagnosis revealed she had Dravet syndrome. Correct diagnosis led to a change in medication and enabled her to talk once again, often with a degree of wit.

‘This illustrates the fact that even after a lifetime of severe epilepsy, it is still possible to regain a degree of cognitive performance,’ he told delegates.

However he pointed out that understanding how a person’s DNA may influence their response to different treatment options including anti-epileptic drugs, dietary therapies and surgery, was an area of research that was still lagging behind other areas.

‘While ever people are having seizures and living with the consequences of seizures, we still have a job to do. We can and we should do better,’ he said.

Neurologists from Switzerland, the US and Belgium reported that people with drug resistant epilepsy were often being denied the chance to benefit from treatments such as neurostimulation as governments refused to invest in therapies that initially could appear more costly.

Speaking at a symposium on drug resistant epilepsy, Professor Philippe Ryvlin from Switzerland said many people worldwide could benefit from treatments such as vagus nerve stimulation (VNS) and deep brain stimulation (DBS), but governments were reluctant to invest in these therapies.

‘There are many forms of neurostimulation that could offer a reduction in seizure frequency and severity for those with drug resistant epilepsy,’ he told delegates, ‘but it all comes down to cost effectiveness.’

James Wheless, neurologist from the US agreed: ‘We all know that VNS, like epilepsy surgery, comes at a high cost, but ultimately it could save the system money. You have to pay up front and then save money further down the road.’

Epilepsy experts said while 70 percent of people with epilepsy should have their seizures controlled with medication, the reality was that only 52 percent were seizure free, leaving a treatment gap of 18 percent.

Chair of the symposium, Professor Paul Boon from Belgium, said: ‘For those with drug resistant epilepsy, we must optimise their seizure control, minimise side effects and maximise quality of life. Treatment options such as neurostimulation exist for these people and could help to close the treatment gap.’

Delegates crowded into the main auditorium to hear Professor Helen Cross of Great Ormond Street Hospital, London, discuss the latest findings from the trials into the medicinal use of cannabis in the treatment of severe childhood epilepsy syndromes.

Professor Cross is the chief UK clinical investigator in the first UK trials of cannnabidiol, a component of cannabis which does not contain the psychoactive component THC. She had been asked to discuss whether cannabis was a miracle or a fairytale, but if delegates were hoping for a definitive answer, this was not the moment.

Cannabis is neither a miracle nor a fairytale, Professor Cross told her audience. In its pure form she said it could offer some benefit in treating epilepsy, but that benefit may be no greater than that offered by one of the new anti-epileptic drugs.

She continued: ‘We have to be particularly concerned about the effects of the drug on the developing brain in children. It is vital that we carry out further long-term safety tests into cannabidiol so that we can ensure its tolerability, sustainability and efficacy.’

Professor Ley Sander from University College London Institute of Neurology and Medical Director of Epilepsy Society told delegates that the power of Google was now forcing healthcare professionals to be more open and informative with patients about Sudden Unexpected Death in Epilepsy (SUDEP).

He said that with so many people accessing information via Google, it was now imperative that healthcare professionals should discuss individual risks around SUDEP, so that the information could be put into context.

‘SUDEP has always been an issue but with so many people looking up “Dr Google” and finding out about SUDEP themselves, it is important that as healthcare professionals, we address the issues in a sensitive and timely manner,’ he said.

‘More and more people are coming to clinic and starting the conversation themselves and this is a good opportunity to explain both about the rarity of SUDEP and also the importance of minimising individual risks.’

Professor Sander also stressed that SUDEP was not the only risk of premature mortality in epilepsy. He said that where a person’s epilepsy was caused by an underlying illness such as a brain tumour or cardiovascular disease, their risk of premature mortality could increase.

‘We need to better understand the interaction of these co-morbidities that are driving the rate of premature death. We also need to identify structural and genetic biomarkers that will alert us that an individual is at a greater risk of SUDEP.’

YouTube videos from the course

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ACNR 2015;15(5):22.  Online 13/11/2015