Issue 21, Winter 2018 Back driving after A couple’s heart 40 years of seizures. wrenching decision Maggie Izzard tells over whether to have her story a second baby PAGE 6 PAGE 18 Looking inside the brain without electrodes PAGE 9 epilepsysociety.org.uk EPILEPSY REVIEW NEWS SUDEP New partnership MEDICATION could lead to greater Review into 2018 has been a remarkable year. People with epilepsy have understanding sodium valproate been responsible for two key dates – 24 April and 1 November. An independent safety review into of SUDEP the epilepsy medication sodium The first marks the introduction of new regulations around valproate was launched in October with a 'call for evidence' put out for sodium valproate. The second is the day, specialist doctors those affected by the medication. in the UK were allowed to start prescribing medicinal cannabis e are excited to team will include scientists from the The review, chaired by Baroness announce a new Epilepsy Society and members of Julia Cumberlege, is examining the for epilepsy. But neither story has yet found its happy ending. partnership with Professor Sanjay Sisodiya's clinical way the health system responded Congenica, a global research team at UCL (University to concerns raised about the Wdiagnostic decision support platform College London), alongside harmful side effects of the anti- Both milestones were made possible largely accessing cannabis-based medicinal provider based in Cambridge, to Congenica's clinical scientists. epilepsy medication. thanks to the determination of women whose products for their children from abroad. study the genomics of SUDEP. The Professor Sisodiya (UCL Queen Up to 40 per cent of babies children have been affected either by side People often accuse the wheels of the new collaboration aims to improve Square Institute of Neurology) exposed to sodium valproate in effects from epilepsy medication or by lack government of grinding laboriously slowly. the clinical understanding, prediction who is also Director of Genomics pregnancy are born with physical of access to treatments they felt would help But not this time. Responding to the stories and treatment of the condition. at the Epilepsy Society, said: “This or neuro-developmental issues. alleviate seizures. of families travelling to Canada to access Sudden unexpected death in important study may help us find The call for evidence is being The valproate women, along with charities medicinal cannabis, and after a review by the epilepsy (SUDEP) occurs in roughly and understand some possible risk carried out by the Independent and patient organisations, campaigned to Government’s chief medical officer, cannabis- 1/1000 people with epilepsy and factors for SUDEP. Collaborating Medicines and Medical Devices raise awareness of side effects associated based products for medicinal use were is often misunderstood. By using with Congenica will ensure Safety Review. Regional meetings with the epilepsy drug, sodium valproate. rescheduled. This means that specialist genomic studies, we will seek to analyses of the data are robust have been held across the country Up to 40 per cent of babies exposed to the doctors can prescribe them where there identify underlying genetic causes and comprehensive, optimising to hear the views of those affected. medication during pregnancy are born with is un-met clinical need. And, importantly, and improve clinical understanding. the chances of discovery.” These are an opportunity to share a physical or neuro-developmental disability. research can begin to gather a robust SUDEP often occurs during Nick Lench, Chief Scientific your experiences but are not On 24 April the Medicines and Healthcare evidence base for these products. sleep and is thought to be caused Officer at Congenica, said: “We are evidence-gathering meetings. products Regulatory Agency announced new But that is where the story has yet to find by a complex interaction of genetic excited to form a partnership with Go to immdsreview.org.uk/visits. regulations around sodium valproate, meaning its happy ending. Interim guidance around the factors. The initial joint study the Epilepsy Society and collaborate html for further updates. every woman prescribed the drug would have products is tight and only a small number are looked at a group of 100 SUDEP with Professor Sisodiya, whose Regulations have changed a discussion with her doctor to help her make likely to benefit from the relaxed laws. The real clinical cases to better understand pioneering use of genetic medicine around the way in which sodium an informed decision about pregnancy and hope is for more research, but this is likely to epilepsy's underlying genetic causes. is beginning to enable the use of valproate is prescribed to girls and future medical treatments. take a minimum of three years to yield results. Using Congenica's gold-standard precision medicine for patients. women of childbearing age with But the campaign is not yet over. Early And when you have a child with ongoing Sapienta diagnostic decision "The genomic knowledge epilepsy. If your doctor has not pointers suggest there are still obstacles in seizures, three years is a long time to wait. support platform, whole genome generated in this project has great called you in for a review, make an making sure the information reaches the right It feels like a battle half won and half lost. and exome sequencing and potential to positively impact the appointment with them to discuss. people. The women, and we as a charity, will Yet doctors cannot prescribe on anecdotal analysis will be carried out to way we manage epilepsy patients You can read more about the not rest until every woman on valproate is evidence and robust evidence takes time. determine possible genetic causes by better understanding of any changes at epilepsysociety.org.uk/ aware of the risks. And next year, we will be So 2018 has been ground breaking, but of SUDEP. Sapienta is being used underlying genetic factors that sodium-valproate-guidelines. repeating our survey to find out how effective there is still much tilling of soil to be done as part of the recently-launched might contribute to SUDEP.” You should never stop taking communications have been around the risks. before both issues are resolved. We will keep NHS Genomic Medicine Service. There are three epilepsy-related sodium valproate without Changes in the law around medicinal you updated in 2019. Happy Christmas. The multi-disciplinary research deaths a day in the UK alone. consulting your doctor. cannabis were also led by a similarly determined group of women who were Nicola Swanborough Medical Director at Epilepsy Society honoured with new post Front cover Editor Nicola Swanborough Epilepsy Society The Epilepsy Society is pleased to the position on 1 December 2018, Transcranial magnetic stimulation Email [email protected] Chalfont St Peter, Bucks SL9 0RJ announce that our medical director, leading the highly successful is a non-invasive way to look inside Telephone 01494 601 417 epilepsysociety.org.uk the brain. This is helping researchers To receive Epilepsy Review, email us at the address Registered charity no 206186 Professor Ley Sander, has been epilepsy department, spanning basic at Epilepsy Society to interpret above, or see back cover A company limited by guarantee appointed as the Head of the science through to clinical trials. information generated through Registered number 492761 England reading a person’s DNA. You can Views expressed by contributors in this publication Department of Clinical and Professor Sander said: "This is find out more on page 9. are not necessarily those of Epilepsy Society Designed by Dugdale Design Ltd Experimental Epilepsy at UCL a wonderful opportunity to really bendugdale.com Information may change after printing and is not Printed by Rapidity Queen Square Institute of Neurology. push forward our epilepsy research a substitute for advice from your own doctors. Rapidity.com Professor Sander has just been programmes and bring exciting Epilepsy Society is not responsible for any Printed on chlorine free paper ranked as the world's leading developments to the people we actions taken as a result of using this information from sustainable forests epilepsy expert for the sixth year see in clinics. I am thrilled to be running by Expertscape. He took up heading up the department." 2 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 3 SEIZURES SCIENCE Watch it on video Voice of the future It's seizures, Protein found in worms helps You can find these videos at not fits to stop seizure activity youtube.com/epilepsysociety Doctors have been told to use plain New research that involves using exciting piece of work offering great simple English rather than medical protein in worms to suppress hope in the future for people with jargon when writing to their patients. seizures could spell hope in the focal epilepsy that does not The Academy of Medical Royal future for thousands of people respond to conventional treatment. Colleges launched a 'Please write with epilepsy. "Focal epilepsy starts in a to me!' initiative that is designed to Scientists at University College specific area of the brain and where improve communications between London (UCL) have used a that area can be pinpointed, it is doctors and patients to make chemical found in worms to reduce sometimes possible to remove the hospital letters easier to understand. seizure activity in the brains focal point through brain surgery. The word 'seizure' to describe of epileptic rats. The chemical But this is only possible if it is a person's epileptic seizures is produces a protein that reduces in an area of the brain that will not Professor Sanjay Sisodiya talks among the terminology which the brain activity when glutamate compromise essential functions about his half marathon to Academy is asking doctors to levels build up, causing neuronal such as language and movement.