Issue 15, Spring/Summer 2016

FAMILY

Laura Grainger talks about her memory loss Me and my , page 6

CAMPAIGN

How 39 per cent of premature epilepsy deaths could be avoided Speak up for epilepsy, page 8

MEDICAL

Osteoporosis and anti-epileptic medication Should you be worried? page 18

epilepsysociety.org.uk : EPILEPSY REVIEW

I have just donated my car to via Giveacar, a not- for-profit social enterprise that turns your old car into cash for charity. It was a bit of an old banger, so I'm afraid the gesture was greater than the gift. It will only fetch scrap value – £10 at a push (something my car required on many an occasion). By the time Giveacar's admin fees have been taken into account, I think Epilepsy Society will receive the princely sum of £7.50 (again, at a push).

Several people have asked me the same two allow you to use your pass before 9am. questions: firstly, did I feel sentimental about If not, it's rubbish. sending the car for scrap; and secondly, was For anyone with , not being able it worth it? to drive is huge. Many people with controlled Prior to the car being picked up, I said seizures say that one of the key reasons they I was definitely not sentimental about it take their medication regularly is the fear going. I said I was not a car person and felt no of losing their licence should they have emotional attachment. It was simply a means a breakthrough . of getting from A to B. Then the scrap So was donating the scrap value of the car merchant turned up, hoisted my car onto worth it? Absolutely. £7.50 may be a drop in the tow bar and my eyes welled up. the ocean, or in the petrol tank, but if it goes Watching my faithful, if unreliable, car in any small way to helping researchers here, being towed away brought home the at Epilepsy Society, understand more about enormity of just how devastating it must be seizures and more importantly stopping for anyone with epilepsy who has to rescind them, then my rusty old banger has gone their driving licence due to seizures. to a good cause. Our society is built around our cars. I don't like to think of it being crushed into We depend on them for getting to work, an unrecognisable pile of metal but shopping at out-of-town malls, socialising, I would like to think that one day we'll nail accessing services, transporting children epilepsy and the open road will be there and the list goes on. for everyone. A bus pass may be some compensation but only if you're lucky enough to live in a city where there is a viable service. And if you live in an area that is enlightened enough to Nicola Swanborough Editor

FRONT COVER Editor Nicola Swanborough Epilepsy Society Giraffe: by a patient Email [email protected] Chalfont St Peter, Bucks SL9 0RJ at Epilepsy Society's Telephone 01494 601 417 epilepsysociety.org.uk Sir William Gowers To receive Epilepsy Review, email us at the Registered charity no 206186 Assessment Centre, address above, or see back cover A company limited by guarantee Chalfont St Peter, Registered number 492761 Buckinghamshire. Views expressed by contributors in this publication are not necessarily those of Epilepsy Society Designed by Ben Dugdale Design bendugdale.com Information may change after printing and is not Printed by Lefa Print a substitute for advice from your own doctors. lefaprint.com Epilepsy Society is not responsible for any actions Printed on chlorine free paper taken as a result of using this information from sustainable forests : NEWS 3

HELPLINE GOVERNMENT Power of listening Department of is recognised For the third time in succession, health fails to Epilepsy Society's Helpline has been awarded the Helpline Partnership prioritise epilepsy Standard mark. The mark is renewed every three years and reflects best practise. Epilepsy Society is the only epilepsy Epilepsy Society has expressed its However David Marshall welcomed charity to have this standard. disappointment at the government's the department of health's decision to The helpline has been offering failure to prioritise services for people accept new commissioning for value support and a listening ear to callers with neurological conditions, including data packs which could help clinical since it opened in 1990. In the financial epilepsy, over the next year. commissioning groups recognise and year, 2015-2016, it took 6,223 calls. A Public Accounts Committee (PAC) address poor outcomes for people Sarah Hill, head of services at the report had made it clear that NHS with epilepsy in their areas. Helpline Partnership said: 'The Helpline services for people with neurological The department has also accepted at Epilepsy Society has provided conditions 'are not consistently recommendations to reduce variations some excellent examples of a high good enough.' in access to neurologists and to give quality service.' In its Treasury Minutes from last clarification to commissioning Epilepsy Society helpline manager, month, the department of health responsibilities for neurology. Christine Brock outlined the value of rejected several key recommendations There are over 12 million people in the helpline:"It is very powerful for by the PAC including calls to retain the England with neurological conditions. a caller to know that someone is position of the national clinical director The Neurological Alliance represents 80 listening. Often it isn't just a practical for neurological conditions and to deliver organisations working to improve the response that is needed, but an a personalised care plan for everyone lives of those people. In a statement it opportunity to talk through the with a long-term health condition. said the government's response meant emotional impact of epilepsy.' Epilepsy Society's interim chief that neurology services would continue One caller explained what the executive David Marshall, said: 'We are to lag behind other areas in standards helpline meant to them: 'I felt I could disappointed to see the government’s and patient outcomes. say everything I needed to say and was admission that NHS England will not It said there is considerable evidence able to cry. I needed someone who be prioritising services for people with that neurology services suffer from had the time to listen to me and neurological conditions in the next year. enormous regional variation in access to who knew about epilepsy.' 'The choice not to retain the services and widespread disengagement national clinical director for adult by local commissioners. Epilepsy Society Helpline neurology, or to deliver personalised Arlene Wilkie, chief executive of 01494 601 400 care plans are decisions that will not the Neurological Alliance, said: 'Once Daytime: Monday, Tuesday, make a positive impact on the lives again, the government has sent a Thursday and Friday 9am – 4pm of people with epilepsy and other message that the needs of people Extended hours: Wednesday neurological conditions at a time with neurological conditions are simply 9am – 8pm. when it is vital progress is being made.' not important enough to focus on.' National call rate.

Drug monitoring unit wins accreditation Epilepsy Society's Therapeutic given to a UCLH 'pathology; clinical Drug Monitoring Unit (TDMU) biochemistry' provider, as well as in Buckinghamshire has been being the first awarded to any awarded accreditation by the -based hospital. UK Accreditation Service (UKAS). Professor Philip Patsalos head The unit carries out clinical of the unit said: 'This is a great analysis of drug levels so that accolade. It is a real tribute to the a person's epilepsy drug therapy vital work which we do, analysing can be individualised to their own drug levels so that drug efficacy therapeutic range. is maximised and side effects are The award is the first of its kind kept to a minimum. " 4 NEWS

GENETICS WOMEN PREGNANCY New chief executive Infertility risks Sodium valproate survey A new study has shown that women The UK's leading epilepsy charities with epilepsy have no more infertility have carried out a survey to find risks than women without the out how aware women are of condition. Nor do they have a the potential dangers around the significantly greater risk of miscarriage. epilepsy drug sodium valproate, Eighty-eight women with epilepsy during pregnancy. took part in the research and 109 The survey was developed by Epilepsy women without the condition. Society, and Young The women were asked questions Epilepsy and was aimed at women with about pregnancy and their menstrual epilepsy between the ages of 16 and 50. Epilepsy Society has a new interim cycle during their childbearing years. The questionnaire aimed to find out chief executive, David Marshall. They were also asked to keep a daily how aware women, young girls and David joined the charity in electronic diary. healthcare professionals are of the February after six years as chief Results showed that there was an potential harm to babies exposed executive of the Hospital of St John almost equivalent rate of pregnancies to sodium valproate in pregnancy. and St Elizabeth and its on site in the two groups - 61.4 per cent in Up to 10 per cent of babies exposed hospice St John's, in London. the epilepsy group and 60.6 per cent to sodium valproate in the womb are Prior to that he was their finance in the healthy controls. The study also at risk of being born with a birth defect director. found that there was an identical while up to 40 per cent are at risk of David brings 20 years of proportion of live births. problems with learning and development. healthcare management The findings were based on the The survey was developed using experience from the public and Women with Epilepsy: Pregnancy input from the MHRA, the UK private sector in the UK, Australia Outcomes and Deliveries study. regulator for all medicines and medical and the Middle East. He has Similar studies had been done before devices. It will seek to discover the extensive knowledge of the UK but using older medication. impact of the organisation’s Valproate healthcare sector – and has The study runs counter to older Toolkit, which was created to make achieved both turnarounds and ones that found women with epilepsy sure all women and healthcare culture change within the sector. were at risk for miscarriage, infertility, professionals are aware of the David said: 'It is wonderful to be and had lower chances of carrying potential dangers of sodium part of such a great organisation. a pregnancy to term. valproate during pregnancy. Epilepsy Society has a very rich history and has really changed the AUTISM PREGNANCY landscape for people with epilepsy over the last 124 years. But there is Link with epilepsy Seizure increase still much to be done. New research from Sweden has Epilepsy Society's medical director 'This is a very exciting time in highlighted epilepsy as one of the two Professor Ley Sander has advised the field of epilepsy. We are on leading causes of premature mortality women who are taking pregabalin the cusp of a genomic revolution in people with autism. not to panic over new research which which could totally change the A study from the Karolinska Institute suggests the drug could pose risks for an way epilepsy is diagnosed and has shown that people with autism unborn child if taken during pregnancy. treated in the future. die 16 years younger than the general Research in the journal Neurology, 'But there are still very pressing population. Those who also have a showed babies of women who were issues which need to be addressed learning disability die more than 30 years taking pregabalin in the first trimester now in improving epilepsy services prematurely at an average age of 39. of pregnancy, were three times more and the way that people access The study analysed data from 27,000 likely to have a birth defect than babies them. We know that 39 per cent of people with autism compared with of women who weren't taking epilepsy premature deaths from epilepsy almost three million people without drugs. The study also showed babies are potentially avoidable. That is the condition. Experts could not say why exposed to pregabalin in the womb not a comfortable statistic. so many people with epilepsy die young. were six times more likely to have a 'Nor is it comfortable when we Epilepsy Society's medical director major defect in the central nervous system. hear people talk about stigma and Professor Ley Sander said: 'We know Professor Sander said the study was prejudice in the workplace in the that there is a strong link between very small, involving 164 women on 21st century. Like our founding epilepsy and cancer, cardiovascular and pregabalin (five with epilepsy) and 656 fathers, we need to make sure the cerebrovascular disease. This report not taking anti-seizure drugs. He said epilepsy landscape continues to confirms autism as another major no firm conclusions could be drawn change radically.' consideration that must be addressed.' but further investigation was necessary. 5

Everyone knows someone Watch it on video

Mum of two Laura Grainger talks about coping with memory loss. Also page 6.

Amazing grandmother Jennifer Barker, 81, completes National Epilepsy Week ran from London marathon. 15-21 May and Epilepsy Society teamed up with Young Epilepsy EMPLOYMENT to run its 'Everyone Knows Someone' campaign in Lack of support at work association with fashion giant A new YouGov survey has shown that River Island. You can read the more than 1 in 4 of workers in Great stories of Chris, Iza and Jade Britain would be concerned about at the website below. working alongside a colleague with epilepsy. The majority said their everyoneknowssomeone.org.uk concern was due to having no idea how to support someone who was Interim chief executive at having a seizure. TERMINOLOGY Epilepsy Society talks about The survey of over 2,000 people also premature mortality on showed that 76 per cent of people had Is 'epileptic' negative? London Live. Also page 18. not been offered training to support 'Epileptic' or 'person with epilepsy' – people with seizures. which do you prefer? Matthew Sowemimo, director Two studies have compared the of external affairs and fundraising at effect of using the terms 'epileptic' Epilepsy Society said: 'This problem and 'person with epilepsy'. In Brazil a would be reduced if there was training study showed that the word 'epileptic' to inform people about what to do provoked more negative attitudes than if someone had a seizure at work. 'person with epilepsy'. But in the UK People with epilepsy would feel safer the word 'epileptic', in English, was and more supported if they know not deemed as negative. Find out how to store that colleagues are better informed Tell us what you think at emergency details on your about epilepsy.' [email protected] mobile phone. 6 FAMILY

Me and my epilepsy Laura Grainger In the second of a new series of your stories in Epilepsy Review, Laura Grainger talks about living with the memory loss caused by her epilepsy, and not being able to remember family holidays

Diagnosis When I got the epilepsy diagnosis, it Seizure freedom I am 34 and was diagnosed with was such a relief to finally know what I was prescribed lamotrigine which has epilepsy four years ago. I was in my car it was… I generally see it as a positive controlled my absence seizures. My dose with my oldest son Sidney, who was thing. My absences aren’t as severe was increased gradually when I was six months old at the time, and I was as some people have them and mine pregnant with my second son Arthur driving to the local Sainsbury’s. It’s a are under control. who is now five months old. Since having route I do all the time, and I’ve lived Arthur I have remained seizure-free; in Witney all my life, but when I got First this has been a very different experience to the roundabout at the end of the I think I had my first absence when to after I had Sidney when I was having road, I was completely lost. I couldn’t I was 16 on holiday in Turkey. I was multiple seizures a day. work out which exit to take. I circled waiting for my friend so we could the roundabout three times in total go out for the evening, and I just confusion, and then I chose an exit remember an intense feeling of but it was the wrong one. I got very déjà vu. I felt it coming on as though scared and came home straight away. I was watching myself, then I got very That’s when I knew I needed to see hot and had to be sick. I just put it the doctor. down to too much sun and exercise. I was referred to the neurology I was too embarrassed to tell department at John Radcliffe Hospital anyone but then over the years it where I was diagnosed with temporal happened more and more and I was lobe epilepsy with autobiographical starting to feel like a different person. and topographical amnesia. I thought I was going crazy. 7

Memory loss is the hardest thing The hardest thing, though, is knowing I won’t get my memories back. The doctors have explained that every time I have an absence seizure, my brain wipes a section of my long-term memory bank. Now I don't remember family holidays I've been on.

Coping with memory loss My memory loss means that I have had to develop coping strategies to keep my life as normal as possible. asks if I remember something, I’ll just Everything in my life is over-planned say ‘no, remind me’. Also now that and very organised. I know where my friends know, they’ll prompt everything is around the house, and me and jog my memory. I keep photos of all my memories in date order in boxes. That way, Coping with epilepsy at work if friends mention a holiday or I told my boss about my memory loss something I don’t remember, I come and he has been incredible. He said straight home and look at the photos. 'we’re really benefiting from your I love making lists – they’re all organisation skills and quick-thinking'. around the house. I even have a tea He made me feel my condition was a chart in the kitchen with the drink very positive part of me. Not for one You can watch Laura talk about preferences of all my friends moment did I feel he was judging me. epilepsy and memory loss at and family. Work has been fantastic about my epilepsysociety.org.uk/laura hospital appointments and they let me work from home when I had my ambulatory EEG. I still always plan what I’m going to say before I say it. I have a job that requires me to be professional and I take my work seriously. I need colleagues to take me seriously too. I always worry that people might think 'will she be a liability?' I’m so concerned about people using my memory loss against me. Tell us your story Would you like to share your story Love and laughter about how epilepsy impacts on Explaining epilepsy My family help me see the humour your life. You might also like to talk I’ve always been awful at but they can be so mean though. about the effect it has on those remembering people’s faces, and it’s One year after my diagnosis, my around you. Or you might like to especially difficult if I’m out and about brother was planning to Photoshop talk about how you get on with and bump into someone out of some family photos to add an extra your life in spite of your epilepsy. context because I can’t remember person – and then ask me whether If you would be happy to share your how well I know them. Even with I remembered having a fifth sibling story in Epilepsy Review, please: friends, I find it hard to remember that moved away! • Fill in our online form at the details of our last conversation, epilepsysociety.org.uk/become- so I have to ask generic questions media-contact to draw out the information. It’s • If you would like a printed copy like putting the jigsaw pieces back of the form, email pressoffice@ together each time. epilepsysociety.org.uk or call I used to feel really embarrassed 01494 601417. Send your and thought I was a bad friend for not completed form to: Press Office, remembering, and I would play along Epilepsy Society, Chesham Lane, in conversations as though I knew Chalfont St Peter, what people were talking about. Buckinghamshire SL9 0RJ. Now though, I realise it’s not me We look forward to hearing being a bad listener, so if someone from you. 8 CAMPAIGN

This spring, Epilepsy Society launched a political campaign to end avoidable premature deaths in epilepsy. The campaign launch was a major success attracting national media coverage, including Sky TV News, Channel Five and the Independent On Sunday. Our policy advisor Finn O'Dwyer-Cunliffe explains why he feels encouraged by the response but still thinks more should be done by our Government Speak up for epilepsy

Around 500,000 people in England have epilepsy, and Awareness of the unacceptable rate of avoidable deaths although figures show that the condition carries with it a has been helped by three MPs writing questions to the greater risk of premature death, over a third (39 per cent) Secretary of State about plans to commission a new audit, and of those deaths are thought to be avoidable through better this was replicated by a group of seven members sponsoring care, treatments and services. This result was found in an early day motion calling for Mr Hunt to take this action. the National Audit that took place in 2002. The Government’s response to the written parliamentary We believe that a new clinical audit will help identify questions, provided by minister for public health Jane Ellison, regional disparities in epilepsy care and increase has mirrored the answer many received to their campaign understanding of current weaknesses in care management emails. We are pleased that the department of health has so that resources can be directed where needed. recognised the importance of this campaign and has Figures show that you are two to three times more likely circulated a letter to Government MPs, which provides a to die prematurely if you have epilepsy, but data collected detailed response to the campaign’s arguments. However, from the Office of National Statistics from 2009-2013, it must be said that this response fails to adequately address shows that rates of premature death vary vastly within the central concerns raised by this campaign. England and create a postcode lottery: for example, someone with epilepsy is 49 per cent more likely to die prematurely in West Yorkshire than in Cheshire. 'We will be pushing for a parliamentary New scientific evidence published in theNeurology debate on premature epilepsy deaths' Journal also demonstrates that people with epilepsy often have other serious health conditions which go undetected, The department’s letter points to a few healthcare some of which could bring about premature death. initiatives involving epilepsy patients, including the Epilepsy Most premature deaths in people with epilepsy are 12 audit and the National Mortality Case Record Review. related to other health conditions, particularly cancers The Epilepsy 12 audit has been an important piece of work in and cardiovascular or cerebrovascular disease. the field of paediatric epilepsy, as it has highlighted common So far we have had a remarkable response from our trends over the past few years in epilepsy care for children supporters to our political campaign highlighting avoidable and young people, with some positive and negative results. deaths in epilepsy. Close to 2,000 people across England The National Mortality Case Record Review is a broader emailed their local MP, asking them to lobby health piece of work that will look into case records of people secretary, Jeremy Hunt to commission a new National with any condition or health issue who have died in acute Clinical Audit on all epilepsy deaths. We want to thank hospital settings, and will eventually aim to create all our supporters who took part in the campaign action a nationally standardised process for these reviews, – 512 MPs were emailed as a result of your letters. particularly in respect to problems in care that may We have seen replies sent to a number of our supporters, have contributed to these deaths. both from Government and opposition MPs, and it is clear Both of these pieces of work are relevant to the overall there is concern within the House of Commons about the understanding of how poor access and deficiencies in care overall quality of care for people with epilepsy, and the in the NHS may be contributing to adverse outcomes for highly variable outcomes uncovered by our campaign. patients. However, none of the studies highlighted by the 9

department of health have focused on uncovering the 'I recently came across the extent of avoidable epilepsy deaths since 2002, and the Epilepsy Society’s campaign to Government’s response has failed to explain why little has "Speak up for epilepsy’"to stop been done to address geographical disparities in outcomes avoidable deaths in epilepsy and quality of care in recent years. and will be fully backing this The response given to our supporters has not ruled out a campaign alongside many full audit on epilepsy deaths taking place in the future, nor other Labour MPs who have has it suggested that such a study is not needed. Indeed, the already shown their support. department’s answer suggests an acknowledgement that more ‘The statistics you have information is necessary in order to improve the quality of provided are shocking and services and the lives of people with epilepsy across the country. more needs to be done. We have been encouraged by the Government’s Considering around 500,000 willingness to listen to our supporters, and we are hopeful people have this condition, that further engagement with health ministers and other it has not been effectively members of parliament will further our cause. We’re also acknowledged. A new audit grateful to those MPs who have taken the time to reply regarding avoidable deaths individually to those supporters who have offered their in epilepsy is needed in order Speak up for epilepsy own personal stories. We will be pushing for a parliamentary to identify how best to tackle debate on the issue of premature epilepsy deaths to this issue effectively. Along continue our lobby for a full National Clinical Audit. with my Labour colleagues, Our campaign has raised awareness of the 39 per cent I will continue to press for of epilepsy deaths that could be avoided with better access this and will support the to care, and of the large variation in outcomes for people with issue wherever possible.’ epilepsy across England. It is clear that these uncomfortable facts have struck a nerve in Westminster, so we must continue to seek the vital information that will help eliminate Dan Jarvis MP, in reply to an avoidable deaths and create an effective and efficient email from his constituent, health service for people with epilepsy that is truly national. Laura Johnson

Samantha's story Nineteen-year-old Samantha Ahearn died of SUDEP (sudden unexpected death in epilepsy) just six months after her first seizure

Samantha had barely had time to come to terms with her diagnosis of epilepsy when she had a seizure on the stairs of her family home. Samantha died at the bottom of the stairs with her mum, Lynn McGoff beside her. 'It was only Samantha's sixth seizure and it was not as vigorous as her previous ones,' said Lynn. 'Everything seemed to just suddenly stop for her. It was as though a light bulb had switched off and she had gone. I couldn't believe she had died. I kept expecting her to start snoring as she usually did after a seizure. I was trying to reassure her.' Bubbly and outgoing, Samantha was a big sister with everything to live for. She had just finished her A' levels and was looking forward to studying 10

was Samantha, parents should be Understanding informed of the risks. It is us who risks and epilepsy find our children dead.' Lynn and her family have now moved house. 'We stayed living in In the UK our home for a couple of years, but I couldn't cope with going up and there are down the stairs everyday where Samantha had died,' said Lynn. around 'It was too much for me. 'Now I worry that the same could 1,200 happen to my other two children. I to be a social worker at Huddersfield was dreading Adam reaching 19 and epilepsy University. am so relieved that he is now 22 and She doted on her two-year-old past the age that Samantha was related sister Alice and the day Samantha died when she developed epilepsy. she had been out to buy a present for 'My younger daughter Alice cannot deaths her 16-year-old brother Adam. It was accept that she will never see her big his birthday. sister again. each year. Samantha died in the summer of 'Samantha was very sensible with 2009 but mum Lynn says the family her epilepsy. She always took her Some of these may be caused has still not recovered from the loss medication. She wasn't a party animal by complications during or of her precious daughter. 'It is the or big drinker. She always showered after a seizure. Others may be worst thing that can happen to rather than had a bath and did due to accidents such as falls a parent,' she continued. 'My life everything she could to stay safe. The or drowning. Some may be is in devastation. day after she died she was due to go due to suicide. on holiday to Tenerife with friends and Recent studies show that the was making sure she had all the right majority of premature deaths 'Parents should be medication. She was just changing in people with epilepsy may be informed of the risks. It is from lamotrigine to levetiracetam caused by another condition us who find them dead.' because lamotrigine had given her the person has alongside hand tremors. their epilepsy. These include 'Six days after Samantha died, the underlying neurological 'After Samantha died I rang her coroner's secretary said a post mortem problems which may have consultant and said to him "you can't showed that Samantha had not been caused the epilepsy, heart or just die of epilepsy." It was only then taking her drugs and had been breathing conditions, anxiety, that he said "you can" and he told us drinking. We knew this was untrue. depression or other mental about SUDEP. When I asked him why It was unbearable. health conditions, and some we had not been told about this 'Because we were so adamant, cancers. Other deaths in people before, he said that Samantha was not the coroner sought a second opinion with epilepsy may relate to in the high risk category for SUDEP. which proved that Samantha had drug or alcohol abuse. 'I was appalled. Are we not proof been taking her drugs, as prescribed, enough that epilepsy is the risk? and had not been drinking. I know that because Samantha was 'Samantha would be 26 now. You can find out more diagnosed as an adult, we could not All her friends are starting to have about risks and epilepsy at automatically be involved in her children. They bring them round to epilepsysociety.org.uk/ appointments, but I think as long as see us which is lovely but my life is risks-epilepsy the person themselves is happy, as not the same without my daughter.'

To talk about concerns around epilepsy SUDEP Action specialises in supporting and premature mortality, please call and involving people bereaved by the Epilepsy Society helpline on epilepsy. If you have been affected by 01494 601 400. Epilepsy deaths are not an epilepsy death please contact the common but do happen, and while SUDEP Action support team on not all deaths are avoidable, some are. 01235 772852. YOUR GUIDE 11

More than 200 delegates joined us also a chance for delegates to meet for Epilepsy Society's annual conference, and share stories and experiences. held this year at the magnificent Here we bring you extracts from some Central Hall in Westminster, London. of our key speakers. You can also hear The conference is an opportunity their presentations and watch their for us to share our most exciting slides at epilepsysociety.org.uk/ developments and research, but it is conference-catchup

Epilepsy conference

Dr Fergus Rugg-Gunn, patients, 61.2 per cent discussed it imperative to emphasise the clinical lead at Epilepsy with very few patients and 7.5 per risk of SUDEP so that the person cent never discussed it,' he said. recognises the importance of Society's Chalfont This was in spite of a 2002 taking their medication regularly, Centre, looks at SUDEP national audit into epilepsy- following a healthy lifestyle with related deaths which showed a balanced diet and adequate – Sudden Unexpected that 39 per cent of deaths in sleep, and having regular medical Death in Epilepsy. adults were potentially preventable. appointments.' Inadequate services highlighted Dr Rugg-Gunn said that much in the report included: could be done to support self- Understanding the risk factors • poor access to outpatients management through seizure around SUDEP is key in reducing • inadequate drug management alarms, smartphone seizure the number of deaths caused by • lack of investigations diaries and SUDEP Action's EpSMon epilepsy, said Dr Fergus Rugg-Gunn. • not seen by a consultant which monitors health and risks Both patients and healthcare • lost in translation from in between GP visits. professionals need to talk openly paediatric to adult services and honestly about SUDEP so as • and lack of a care package. to modify risk factors and to put Dr Rugg-Gunn emphasised that in place appropriate support. these were all issues which should 'Educate to protect' was his and could be addressed. take-home message. 'Every patient has the right to 'In 2006, a questionnaire of know the full consequences of 288 UK neurologists showed that their illness,' he told delegates. only 4.7 per cent always discussed 'The potential risks should be SUDEP with their epilepsy patients. disclosed in the context of Just over 25 per cent discussed it comprehensive education. There with the majority of epilepsy are circumstances where it is 12

Epilepsy Society’s medical director Professor Ley Professor Sanjay Sisodiya, Sander bemoans the ‘frustrating’ lack of advances director of genomics at in epilepsy treatment over the last 30 years and Epilepsy Society, on the stresses the need for a new treatment model role of science in epilepsy

'We treat seizures and not mortality, and to provide better, 'Through genetics we are aiming epilepsy,' he said. 'We need a more cost-effective options. to get the best treatment for "curative" disease-modifying He also argued for a shift in everyone with epilepsy. Precision treatment that is lacking and treatment model for epilepsy medicine combines precise urgently needed. that would affect epileptogenesis diagnosis with precise data analysis 'We are treating the symptom rather than simply treating the and precise treatment. It is about and not the cause of epilepsy. It’s symptoms of epilepsy. getting the right treatment to the like giving someone with anaemia Professor Sander explained right patient at the right time. iron tablets rather than treating that in his clinic, he lives by two This presents specific challenges the root cause. mantras: 'Is it really epilepsy?' with epilepsy. We know that it is 'Before I retire, I want to see and 'epilepsy and what else?' not one condition but rather a treatments that are tailored to The first reflects the 20 per cent collection of different types of the person in front of me.' misdiagnosis in epilepsy and the conditions. For each individual we Professor Sander said that second underlines the number of must work out the type of epilepsy while the US Food and Drug people with epilepsy who also have they have and what will be the Administration (FDA) consider other accompanying conditions. right treatment for them. This may a 50 per cent reduction in seizures He called for a better be a particular epilepsy drug or it as a valid outcome in the trial of relationship between physicians could be surgery or a dietary therapy. anti-epileptic drugs (AEDs), and patients, emphasising the There are many occasions when it 50 per cent does not make importance of regular treatment may not be clear what is happening a difference in people’s lives. reviews and advocating discussing with a person's epilepsy. The He said epilepsy often imposes surgical options at the earliest picture may be complicated with social disadvantage. It can be a possibility for those who may lots of seizures, lots of medication disability that affects education be candidates for this treatment.' and admissions to hospital. and employment prospects. 'Telling someone they will have half the seizures they currently do is like telling someone to jump from the fifth storey of a building rather than the tenth.' Professor Sander said that 90-95 per cent of people with epilepsy use AEDs as they are still the mainstay of current treatment. He said that although AEDs are not perfect they would remain an important element of treatment even in a few years’ time in the age of genomics. He said that even though there are more than 25 AEDs currently available, up to 30 per cent of people with epilepsy do not respond to the current drugs, a figure that has not changed during his career. He said there is an urgent need for new AEDs to reduce and stop seizures, morbidity and premature 13

Science is helping us to undo this Genetics is playing a huge part 'People with long- complicated picture by building up in helping to deepen our layers of information. First of all understanding of epilepsy. But to term conditions we take a detailed history of the really make progress it is important spend an average person's epilepsy. We then carry for us to join the world of big data. out tests – for example, MRI, EEG, Looking at one person with of just three hours a blood tests. Now we are starting to epilepsy would be like looking year with healthcare look at a person's genetic make-up at one oak tree in a forest of oak so that gradually we begin to trees. We could learn a limited professionals. They understand more about epilepsy amount of information but if we should be given the in some people and how we can look at the whole forest we could improve their treatment. learn so much more. required support to Aidan is a young man who was Epilepsy Society is joining the live the other 8,757 referred to Epilepsy Society with world of big data. We have been hours of the year multiple seizures and was in and leading on EpiPGX, a multi-centre out of hospital. By listening to his project involving scientists from looking after history and advising for him to across Europe who have been themselves' undergo genetic tests, we were investigating the way a person's able to confirm that Aidan has genes affect their response to . different medications. Juliet Ashton, Sapphire We know that with Dravet We hope that this will help nurse consultant for syndrome some treatments will us to identify genome-based epilepsy, commissioning work well, while others may make biomarkers that will show who and education things worse. In Aidan's case we will respond to which drug, have been able to make drug at which dose and with fewest changes that have had a huge side effects. benefit for him. With genetics we are now Aidan's seizures have become looking at the acorns but again it is much less frequent. He is speaking only by looking at many acorns that again and finding out about the we are able to start unravelling world. He is developing a sense of the genetic architecture and humour and even a sense of sarcasm. understanding its impact.' 14

Jasmine Smith was 17 consultant decided that surgery Your thoughts could be an option for me and in when she was diagnosed June 2011 Andrew McEvoy, my with epilepsy. Here she brilliant surgeon at the NHNN in London, operated on me to talks about how it remove my brain tumour. After the changed her life surgery a cyst started growing in its place so I had to have further surgery. 'Eight years ago I was a healthy, I then began working at Epilepsy happy, lucky teenager. At 17 I Society as a volunteer. I wanted 'I am a special needs teacher was training to be a ballet dancer. people with epilepsy to have as of primary school aged children. The I had passed my driving test and much help as I had enjoyed. I was majority of my class have a diagnosis was out clubbing at weekends. working with people with severe of epilepsy so I've come along to But I started to feel really tired. epilepsy and learned about the find out how I can support them. It I also started talking nonsense. work that epilepsy specialist nurses is good to be around other people I was in the car with my mother do. Suddenly I realised what I who experience epilepsy daily. and started talking about my wanted to do with my life. It is definitely worth coming, brother. This was strange as I don't I got a place at uni to train as a especially if you are supporting have a brother. It was only later nurse. But on my placement I was people with epilepsy.' I realised I was having a seizure. working night shifts and I had my I went to see my GP and was sent first seizure since my surgery. The for tests including an MRI scan. This tumour was growing back. I was was when I was told I had a brain in hospital in a coma for a week. tumour and epilepsy. I started After that I took six months having generalised tonic clonic off from my nursing course and seizures which were very scary. booked an 11-day holiday in I went from being someone who Croatia on my own. My family was leading a very normal thought I was mad but during that 'What I have gained from the life to being someone holiday I told everyone I met that conference is around the holistic with a brain tumour. I had epilepsy. It was amazing the approach to epilepsy care and that I had only passed my amount of people I told who it's not just about medication and driving test four months knew others with epilepsy. treating the symptoms. It is much previously but lost my Six weeks ago I got my nursing more around the individual person's licence because of the degree. Now I am looking to the care and what they want to get seizures. future. I would not wish epilepsy out of it.' Then I discovered on anyone. It is not just the contemporary dance seizures. It is the loss of and started on a independence. Not being able to performing arts have a bath on your own or use course. I was still curling irons. All the little things having two or that people don't think about. three seizures But epilepsy isn't the end of a week. Two everything. I have learned so much months into about myself through my epilepsy. 'I have found it really interesting the course I One minute I was dancing, now I hearing about genetics and how was in hospital have a whole new career. I would that can help us in the future with when I received urge anyone with epilepsy to have new treatments.' a letter from my the best life possible. lecturer at uni saying other students were finding my seizures too distressing. It was a 'I have learned so much real kick in the teeth. through my epilepsy. This was when I was determined that One minute I was epilepsy should not dancing, now I have stop my education. Eventually my a whole new career.' RESEARCH 15

Hens and coconuts and the ketogenic diet

Katrin Augustin keeps hens. She is also one of the researchers who have identified the anti-seizure mechanism behind a specific ketogenic diet therapy. Here she explains how a fatty acid in coconut oil could affect our brain and could hold future promise for people with epilepsy

Gwendolyn was three years old when Clinic in the US, set out to develop children and adolescents who do not she had her first seizure. She started a diet that could mimic the effects respond well to anti-epileptic drugs. with rare, short attacks that built up of starvation without having to keep But it is still not understood how sugar over the following seven years until children from eating. reduction and ketone production she was experiencing between 60 to He knew that when people fasted help reduce seizures. 100 seizures a day. Finally, when she their brains no longer received sugar Over time, different versions of the failed to respond to any treatment, her to keep working but relied only on ketogenic diet, such as the medium doctors decided to try a new approach ketones, small molecules that are chain triglyceride (or MCT) ketogenic recommended by French clinicians. metabolised from fats. He believed diet and, more recently, the modified They put her to bed, withdrew all food that these ketones changed the brain Atkins diet, have been developed that and kept her on a light broth for the chemistry to prevent seizures and offer more flexibility by allowing more next three weeks. Within three days, therefore predicted that replacing carbohydrates and less fat. her seizures had stopped, but as soon most carbohydrates in the diet with The MCT ketogenic diet contains as she went back to her everyday fats would have the same effect as medium-chain fatty acids rather than activities a few weeks later, her starving. Based on that he designed the usual long-chain fatty acids found epilepsy relapsed. the ketogenic diet which consists of in most foods. Medium-chain fats are That was in 1922. A year before a ratio of four grams of fat for every naturally found in goat's and horse's Gwendolyn’s story was published in gram of carbohydrates. milk, and coconut and palm kernel oil. the Canadian Medical Association Today, almost 100 years later, the In the MCT ketogenic diet they are Journal, Dr Wilder from the Mayo diet is still being used successfully in provided as an oil supplement. 16 XXX

Because they are smaller, they are be another anti-epileptic drug. There constipation and kidney stones that a absorbed that much faster and are already two medications that block healthy person need not risk. It is true, generate ketones more readily the same receptors as decanoic acid, however, that reduced sugar intake than long-chain fats. but their exact mechanisms may vary is associated with weight loss leading The medium chain fatty acid that resulting in different side effects or to a lower risk for heart disease has caused most excitement is levels of seizure control. How effective and diabetes. decanoic acid, found in coconut decanoic acid is compared to these The question that remains is, why oil. Our research at Royal Holloway anti-epileptic drugs still requires more the ketogenic diets are not used in all University of London and University investigation. Also, the efficacy of children with hard-to-treat epilepsy. College London has shown that decanoic acid does not explain why One reason is that many doctors are this, rather than the ketones in the the classic ketogenic diet, which does still not aware that an alternative to MCT ketogenic diet, has strong not use medium-chain fatty acids, is anti-epileptic drugs even exists. The anti-seizure effects. similarly effective. other reason is that, unfortunately, Decanoic acid has been shown to Even though the ketogenic diets just as with anti-epileptic drugs, not block seizure activity and may also were designed use in epilepsy, recently everyone on the ketogenic diet induce fewer side effects than many of more and more conditions have been becomes seizure free and some do not the traditional anti-epileptic medications. suggested to benefit from ketones respond at all. However, what makes Results show that the direct inhibition provided by the MCT ketogenic diet. the ketogenic diet so special is that it of excitatory transmission in the brain has worked in some patients where by decanoic acid contributes to the medication had failed. For the first anti-convulsant effect of the MCT diet. ' Decanoic acid has been time, we can see that fats and their Furthermore, this effect is through shown to block seizure metabolites can alter brain function inhibition of AMPA receptors in the activity and may induce – and that may be a first glimpse of brain, a target shared by one how our diet can affect our brain. of the newest anti-epileptic drugs, fewer side effects than perampanel. many anti-epileptic Researchers at UCL also showed Katrin Augustin is a post graduate that adding decanoic acid to neuronal medications' research student at the School of cells helped to increase the number of Biological Sciences at Royal Holloway mitochondria in the cells – these are For instance, ketones may slow the University of London. the parts of the cell which generate progression of Alzheimer’s disease. most of the energy needed to keep A study from 2008 found that neurons it alive. By increasing the number of in patients with Alzheimer’s disease mitochondria, the MCT ketogenic diet could not take up enough glucose and might also prevent cells from dying so starved, a phenomenon that they during seizures. said could explain some of the cell Surprisingly, the MCT ketogenic death in Alzheimer’s. Patients who diet is not used a lot outside of the UK received a ketogenic compound and Canada – even though it is the derived from medium-chain fatty first diet for which two independent acids did better in cognitive tasks mechanisms of action in epilepsy than other patients. have been demonstrated. The MCT ketogenic diet might also Patients and dieticians have often be beneficial in the treatment of brain criticised that there is a poor cancers. In 1995, two children who correlation between ketone levels and had advanced brain cancer were seizure control. A mechanism that treated with the diet. Cancer cells live involves fats included in the diet rather on glucose, but in contrast to healthy than ketones could help explain this cells, they cannot use ketones when discrepancy. Currently, research into glucose levels are low. As a result of a role for ketones in seizure control is the high-fat diet, the tumours of both still ongoing. There is evidence that children shrank by 20 per cent and ketones alone can delay seizures and they did not progress in their disease. that they have a similar protective effect So, if it is so healthy, should we Tales from the hen house: watch on mitochondria as decanoic acid. all live on a ketogenic diet? That is Katrin Augustin explain about the Considering the benefits from probably not necessary. First of all, ketogenic diet at http://bit.ly/25jVv7r decanoic acid itself, could there be an the diet is not easy to stick to. Fat-rich And you can read Katrin's blog about easier way to achieve seizure control foods are hard to digest resulting in studying as a postgraduate research than the diet, by only using decanoic an upset stomach and nausea and student while having young children acid? In that case, decanoic acid could there are other side-effects such as at epilepsysociety.org.uk/blog/katrin Photograph: Rachel Lewis 17 18 MEDICAL Should you worry about osteoporosis?

Osteoporosis is a condition which causes bones to weaken and break easily. It is often thought of as mainly affecting the elderly. Sadly, as a result of the action some epilepsy drugs have on bones, it can also cause problems for those with epilepsy. National Osteoporosis Society Helpline Nurse Tina Stoodley explains

What is osteoporosis? First, a bit of Latin, because there’s a clue in the name. The word osteoporosis means porous bones and it occurs when the Cross section taken of healthy, left, and osteoporotic bones, taken through struts which make up the mesh-like a very powerful microscope. © Alan Boyde 2016 structure within bones become thin. This causes them to become fragile and break easily following what could Anti-epileptic drugs and bones epileptic drugs are thought to be just a minor bump or fall. Although more research is needed, stimulate a liver enzyme which That’s osteoporosis and it's scientists are aware that AEDs can be destroys vitamin D. This family of surprisingly common: almost one in associated with an increased risk for drugs, which include phenytoin, two women and one in five men over osteoporosis and fractures. phenobarbital, carbamazepine and the age of 50 will break a bone, mainly For some people, the drugs can primidone are known as enzyme due to poor bone health. Today, the cause drowsiness and slowing down inducing anti-epileptic drugs. National Osteoporosis Society of the body’s reflexes, as well as Because of these findings, drug estimates there are more than three affecting balance and coordination safety group the MHRA – looked at all million people in the UK affected by leading to an increased risk of falling. the evidence and found that long-term the condition. But it has also been shown that taking treatment with carbamazepine, While many of these have anti-epileptic drugs for a long period phenytoin and primidone and also developed osteoporosis because of can decrease bone density. another drug called sodium valproate their age, family history, body weight It is also thought that some anti- can reduce bone density and may lead or because of conditions such as epileptic drugs alter the way vitamin D, to osteoporosis in certain ‘risk’ groups. coeliac disease, some will have which helps with the absorption of These groups include those developed the condition because they calcium, is broken down and used by immobilised for long periods, those are taking anti-epileptic drugs (AEDs). the body. Some of the older anti- not getting enough calcium in their 19

keep bones healthy and strong. The National Institute for Health and Care Excellence (NICE) recommends that vitamin D levels and other checks to assess bone health are carried out every 2-5 years for all adults who take enzyme inducing AEDs. UK guidance also suggests a vitamin D supplement for those on long term AEDs. Assessing bone health, especially if you are over 50, may also show that a DXA bone density scan may be useful. These scans may help a doctor decide whether a drug treatment for bone protection should be prescribed. Although there are no definitive recommendations for people with epilepsy, if you have been taking AEDs long-term and if you have other risk factors, it may be useful to discuss your possible risk of osteoporosis and fracture with your doctor.

Helen’s story

Helen, 60, has both osteoporosis and epilepsy. She is gradually being If you are considered to be at a high risk of breaking bones easily, the moved to a new treatment because good news is, there is plenty you can do to keep your bones strong: her existing AED may have been affecting her bone density. – Eat a well-balanced calcium-rich diet bones stronger and less likely She found out she had osteoporosis – Make sure you get adequate to break may be prescribed by when she was around 50 and suffered vitamin D through safe sunlight your doctor a fractured wrist. exposure – Pain relieving medications will help 'My doctor told me I had – A calcium and vitamin D if fractures have already occurred osteoporosis in my hips and spine supplement may be prescribed – Take plenty of weight-bearing and I started taking alendronic acid. if intake of these needs to be exercise – any exercise in which I haven’t suffered any major fractures, boosted you are supporting your own body though I have broken a rib. I also have – A drug treatment to make weak weight through your feet or legs rheumatoid arthritis,' she says. Helen found out she had epilepsy during the summer of 2015. She has diet or having insufficient exposure to including the direct effects of the asleep seizures. sunlight through the summer months AEDs, but also the seizures themselves 'I only became aware of it because to maintain adequate vitamin D levels. that can cause falls and bones to break. my partner noticed something was Currently there is very limited and Other contributory factors if you happening when I was asleep. I went conflicting evidence about the long- have epilepsy include lack of exposure to see the doctor and was diagnosed term effects of non-enzyme inducing to sunlight which can cause lower and started taking sodium valproate. AEDs on bone. These newer drugs vitamin D levels, and reduced activity 'My doctor told me the drug might include gabapentin, lamotrigine, levels or physical restrictions which can have an effect on my bone density and topiramate and levetiracetam. More impair bone health and consequently could be related to osteoporosis, so research is needed, but it is thought increase fracture risk. I’m gradually being moved to a new that, when used for a long period of treatment,' she says. time, most AEDs are likely to be linked Protecting bones to an increased risk of breaking bones. For those affected by epilepsy and More information: osteoporosis, it’s important to continue nos.org.uk Other risk factors for fractures to take the AEDs as prescribed. Eating Freephone Helpline: 0808 800 0035 So, those who have epilepsy are more a well-balanced calcium-rich diet and Email: [email protected] likely to have fractures, but this is likely incorporating as much weight bearing epilepsysociety.org.uk/osteoporosis- to be due to a combination of factors exercise as possible will also help to and-epilepsy 20 WAYS AND MEANS

Get all our first aid Recovery position information from our free app at epilepsysociety.org. uk/free-epilepsy- Do you know how to put someone in the recovery smartphone-app position following a tonic clonic seizure? Our step- by-step guide shows you what to do once the Watch our recovery position video at epilepsysociety.org. person has stopped shaking uk/recovery-position-video

Step-by-step recovery position

1 Kneel on the floor to one side 2 Place the person’s arm that is 3 Gently pick up their other hand of the person. nearest you at a right angle to with your palm against theirs (palm their body, so that it is bent at to palm). Now place the back of the elbow with the hand pointing their hand onto their opposite cheek upwards. This will keep it out of (for example, against their left cheek the way when you roll them over. if it is their right hand). Keep your hand there to guide and support their head as you roll them.

4 Use your other arm to reach across 5 Gently pull their knee towards 6 Move the bent leg that is nearest to the person’s knee that is furthest you so that they roll over onto to you, in front of their body so from you, and pull it up so that their their side, facing you. Their body that it is resting on the floor. This leg is bent and their foot is flat on weight should help them to position will help to balance them. the floor. roll over quite easily.

7 Gently raise their chin to tilt their head back slightly, as this will open up their airway and help them to breathe. Check that nothing is blocking their airway. If there is an obstruction, such as food in their mouth, remove this if you can do so safely. Stay with them, giving reassurance, until they have fully recovered. PROBLEM SHARED 21

Changing lifestyle can never hurt. I would keep a record of the changes you make though and do them In the last three years I have had six or seven seizures gradually to see if certain things all brought on by late night partying. My neurologist make a difference. prescribed anti-epileptic drugs but I was reluctant to In terms of medication, I would take them as I felt I could avoid further seizures by strongly recommend taking it, but through discussions with your changing my lifestyle. However I recently had another neurologist see if you can be on a seizure after a particularly stressful time at work. low dose and have your blood levels I am still reluctant to take the drugs as I am worried checked regularly,to see how much about the side effects. My neurologist is very understanding the medication is affecting you and how much is in your system. but thinks I should start on a low dose of levetiracetam. Sadly sometimes if epilepsy goes I am really torn. I obviously want to be safe but I don't untreated, or if you start having more want a lifetime of drugs if I can control the seizures seizures, it can have a bigger impact through lifestyle choices. Does anyone have any advice? on your life. David facebook.com/epilepsysociety

James, Preston You can read more replies to James' letter at: facebook.com/epilepsysociety

Your replies Next issue

I have been in your position in the Just as my daughter's epilepsy I have had epilepsy since I was 12 past and I know exactly how you feel. came under control, we found out years old. I'm 31 now and planning I found it emotionally and physically she was having non-epileptic seizures to start a family. I still have seizures hard trying to find the right medication. which are similar, but brought about every six months or so – sometimes (Medication reacts differently for by stress and tiredness. Would be just one or sometimes I have a everyone.) Having said that it is worth worth getting an EEG if you haven't cluster of them. it to protect yourself as frequency already, just to check if it is epilepsy. I know I am not on one of the of seizures can change over time. Non-epileptic seizures can't normally drugs that can be risky for an Unfortunately you can't rely on lifestyle be controlled by medication, but unborn baby during pregnancy but changes to help with your seizures. seeing a psychologist has really does anyone have any advice about Being on a low dose should help you helped my daughter to control hers. pregnancy and epilepsy and also see how reactive you are to the side Geoff, facebook.com/epilepsysociety childbirth and breastfeeding? I am effects and being on a low dose might starting to feel quite anxious. be enough anyway to protect you. My advice take the advice of your I'm also worried about my baby Kirsty, facebook.com/epilepsysociety neurologist. My seizures are triggered inheriting my epilepsy. One of my by stress, lack of sleep and hormones. aunts and a cousin on my mum's I thought I could do similar. I can go years without any then when side both have it, although their I wanted to experience my body and they kick in I can have multiple ones epilepsy is milder than mine? mind bare, without meds after being back to back or monthly. Meds don't Alison, Brighton on them since age of 11, so I stopped. always control but worth a shot. I was 20 at the time. I suffered in Also if bad side effects there are a WOULD YOU LIKE TO SHARE shocking ways, from approx two number of meds they can try. I've YOUR THOUGHTS WITH ALISON? (seizures) a year to one a month. But of been on a ton of different meds Or do you have a question to course, I thought life style changes and until they stop working or bad ask our readers? Email nicola. methods to de-stress would solve it. side effects and we change. [email protected]. Eventually I had an encounter of status Michelle facebook.com/epilepsysociety uk, write to Editor, Epilepsy Review, epilepticus which was frightening for Epilepsy Society, Chalfont St Peter, all around me. Since then I returned to I would ask your neurologist if they Bucks SL9 0RJ, or reply at : meds. Tried various types and happily can send you for a video telemetry EEG facebook.com/epilepsysociety rejoicing a year without a seizure. and MRI to try and find where your Clarissa, facebook.com/epilepsysociety seizures are originating. 22 AND FINALLY Tonic comic

Stand-up comic and all-round funny She is starting slowly to identify triggers for her manic episodes and feeling paralysed with the meds she is girl Juliet Stephens has the last laugh prescribed to calm her down. Like many people with mental when it comes to her epilepsy health problems, she has been prescribed anti-convulsants as a default med, so we have that in common too. She was struggling with the invisibility of mental illness, In the last issue I reflected on what a drag I find it to which I can obviously relate to, and the stigma that comes constantly reintroduce my epilepsy to new people with an invisible disease – again, check. I encounter in life. Oh what a terrible burden, to have She knows that the law of probability means that she’s explain to the uninitiated again and again, to answer their likely to know already somebody with bi polar disorder questions, dispel their myths, hear about their schoolfriend but, because it is unfortunately not talked about more, she who once had a seizure during breaktime, experience doesn’t know who that someone is. She’s really looking for their concern and curiosity. What a chore! other people who understand, and I really relate to that. For the hashtag happy amongst us, this kind of I’m really glad that we found a new way to connect and dilemma really does fall under the well worn hashtag understand each other’s experience that little bit better. #firstworldproblems in that it’s really not a problem that Like our treetop chattering, preening primate cousins, people care enough to find out about my epilepsy. we are social creatures, and looking for connections Actually it is pretty cool. is just a thing that we do. We need to find ‘our It’s nearly 25 years since I was diagnosed and people’, and these days our communities tend to these days I tend to wear my epilepsy like a be based on shared interests and experiences comfortable cardi. It’s so familiar, it can be rather than which village you hail from. traced through different memories from The LGBT (Lesbian, Gay, Bisexual and my life, as if I’m flipping through a Transgendered) community is built virtual album of memorable seizures on a mutual recognition of being from across the years – seizures on ‘other’ than the heterosexual holidays and at parties, that time I was at mainstream. Lesbians and gay men don’t the airport, another time in Pret a Manger really have much to do with each other (think – after which they sent me a ‘Get Well Soon’ about it), but within the LGBT community these bunch of flowers (personally I’d have preferred free micro communities are united under a beautiful sandwiches for life, but what can you do?), that office, rainbow umbrella. different ambulance drivers, different A&Es, the people I wonder if we can build a LTMC (Long Term Medical who have been with me during and after a seizure – Condition) community, based on a mutual recognition memories of friends, ex-boyfriends and ex-girlfriends, of a medical condition being a significant part of your family members, all of whom have taken a role in being life experience, with all that means for you: hospital part of my life’s story, even if only for a short while. visits, medication, the emotional cycle of frustration and My story of epilepsy is kind of the story of me; the places disappointment after a relapse and hope for being well, I’ve been and worked and the people I have known and feeling vulnerable and hating it, coming out to people loved. I can make some peace with that now. Of course it about our condition. helps I haven’t had a seizure for nearly 18 months, but if All us people with epilepsy could come together with I did, these days I increasingly feel ‘oh, this again’ and I run people with mental illness, asthma, diabetes, irritable bowel through the familiar cycle of disappointment, sadness and syndrome, arthritis etc and celebrate our diversity and our frustration which heal slowly, as my body recovers. sameness. We could unite under a beautiful, I don’t know, A friend of mine was diagnosed with bi-polar disorder patchwork? banner (rainbows having already been taken) a few years ago, and she recently asked me if we could chat and create community action groups, discussion forums, because she wanted to speak to someone ‘who share experiences beyond the reach of our own medical understands what it’s like for your brain to make you ill'. condition, lobby for fundamental rights and visibility I had never really thought of it before in those terms, but in the media. And we could have a parade! she’s absolutely right that epilepsy is the brain making the Really I just want a parade. Who’s with me? *explodes body ill. I was so glad that she reached out; she’s still glitter cannon. adjusting to her diagnosis – it’s a slow and sometimes hard slog, after all – and it really struck me that she was getting JULIET STEPHENS to know herself in a new way. LAUGHING ALLOWED EPILEPSY SOCIETY 23

Tea for the Queen

Her Majesty the Queen has had a long relationship with Epilepsy Society, since becoming patron in 1952. On Sunday 12 June 2016, The Mall in St James’ Park will be transformed for its largest ever street party to celebrate The Queen’s patronage of over 600 charities and organisations on the occasion of her 90th birthday. Wishing ‘Team Purple’ cyclists good luck Our supporters will also be holding their own 'Tea for the Epilepsy Society would like to wish If you have a ballot place we Queen' parties up and down the all our cyclists the best of luck for would love to welcome you to our country, to mark the day and raise the Ride London 100. On 31 July, team prudentialridelondon.co.uk/ money for epilepsy. Enjoy the party, our ‘Team Purple’ riders will cycle charity/ride-charity/ wherever you are. the 2012 Olympic road race route, i-have-ballot-place/ completing 100 miles in less than If you missed out this year, nine hours. Ride London-Surrey 100 Epilepsy Society has places for 2017 Purple power starts in Queen Elizabeth Olympic so please get in touch via Park, and follows a 100-mile route [email protected] Thanks to all your amazing on closed roads through the capital If you’re not ready for the full efforts, we raised over £40,000 on and into Surrey’s stunning 100 how about Ride London 46, a Purple Day, 26 March. You baked, countryside before finishing on The great traffic-free route for your you ran, you dressed up, dressed Mall in central London. first sportive. down, painted the town – and your fingernails – purple, some of you even skydived to raise funds. And the money is still pouring in. We would like to thank every one of you. Your money will help to provide vital services for people affected by epilepsy, including our confidential helpline. It will also help to fund research into epilepsy and hopefully, one day, find a cure.

Community spirit Long running support Helpline appeal Epilepsy Society said a huge thank ... and a big thank you to all our 32 Our helpline takes calls from you to CAWC International for amazing runners who took part in thousands of people each year, giving 27 years of support to the 2016 London Marathon. providing support, information people with epilepsy. The fastest runner this year was and a listening ear at a time when CAWC International (the Zac Peel who completed the run in it is needed most. But the helpline Chilterns American Women’s Club, 3 hours 28 minutes and 30 seconds, costs around £163,000 a year to run pictured above outside our Epilepsy followed just six seconds later by and relies on donations from our Society Research Centre) have David Poole. Eighty-one-year-old supporters to ensure there is always recently celebrated 65 years of runner Jennifer Barker delighted us someone there when needed. community activity in the Chilterns, all by completing the marathon in This is why we are launching and have raised over £160,000 for 7 hours and 21 minutes. our helpline appeal so that we can Epilepsy Society since 1989. Epilepsy Society fundraising continue and increase this service. Epilepsy Society fundraising officer, officer, Ben O'Keefe said: 'We are To find out more or to donate, Chloe Chambers said: 'We are hugely extremely proud of our 2016 please visit epilepsysociety.org.uk/ grateful for all their support.' London Marathon team.' donate HELPLINE APPEAL

‘Crying always feels worse when you are alone but if you phone the helpline you can have a Sarah Reid good cry and they can point you in the right direction… I felt like a weight had been lifted off my shoulders. I felt I wasn’t alone.’

We rely on donations from you to ensure our helpline is there when callers, like Sarah, need it. In our latest appeal, Sarah asks for your urgent help in enabling us to continue providing this vital lifeline for everyone affected by epilepsy.

Answer Sarah’s urgent appeal Callers need our help now, so please donate today by calling 01494 601410 or visit epilepsysociety.org.uk/donate

Issue 12, Spring 2015 Issue 11, Winter 2014/2015 Issue 5, September 2012

FAMILY CULTURE WELL BEING

How exercise can help with Supermodel and actress How not being able to drive due to seizures can impact your seizures Agyness Deyn talks about on quality of life, employment her new film Electricity Exercise and you, page 6 and self esteem Epilepsy – the film, page 6 Driving force, page 8

MEDICAL RESEARCH WELLBEING MEDICAL Welcoming a new era in the The menopause – will it affect Ongoing seizures? Side effects? diagnosis and treatment of your epilepsy? Dr Fergus Rugg-Gunn explores epilepsy at the world-class Dr Dominic Heaney explains, page 8 your options Epilepsy Society Research Centre When the AEDs don’t work, page 8 Brain imaging and genetics, page 15

WAYS AND MEANS GOVERNMENT WAYS AND MEANS Making sure you get the same MPs call for better epilepsy How to find an epilepsy version of your anti-epileptic services and more funding service near you medication every time Pharmacist Janet Clark explains, page 20 a full life for everyone Epilepsy in parliament, page 18 Our new interactive map, page 20 affected by epilepsy epilepsysociety.org.uk www.epilepsysociety.org.uk www.epilepsysociety.org.uk www.epilepsysociety.org.uk

01494 601 300 ER-2012-5-11406-art.indd 1 30/08/2012 19:08 11643-ER-Isu12.indd 1 11598_ER-Isu11.indd18/03/2015 14:51 1 11530_ER-Isu9-OL.indd18/11/2014 14:38 1 04/02/2014 18:11 Epilepsy Review magazine Confidential Helpline – 01494 601 400 If you would like to receive future copies of Epilepsy Review, Monday to Friday 9am – 4pm, Wednesday 9am – 8pm. call our membership office on 01494 601 402 or visit National call rate. Information and emotional support. epilepsysociety.org.uk/membership