Issue 23, Winter 2019

Victorian underwear How you can help us exposes life with extend our Helpline to five days a week PAGE 18 PAGE 16

How climate change is affecting people with epilepsy PAGE 14

epilepsysociety.org.uk EPILEPSY REVIEW

In the run up to Christmas, we inevitably receive an influx of calls about flashing lights. Although only around three per cent of people with epilepsy are photosensitive, the stress caused by Christmas lights that flash and flicker throughout the festive season, is significant. But this year, Christmas lights and photosensitivity reached a new peak.

One of our supporters had arranged a series agreed to meet with her and find out more of fundraising events at local Christmas fairs, about epilepsy and how they could work with to help raise money for our research, her to make sure she could have her stall information services and Helpline. without putting herself at risk of a . The first three fairs had gone well. She "He has also invited me to hold more stalls was just preparing for her fourth and final in the future, to raise awareness of epilepsy," event at a local community centre where she said. there would be a Christmas grotto and the So, a potentially negative situation was usual array of festive stalls. turned into a positive. As we went to press, But just a couple of weeks before the event our supporter was hoping her stall would go was due to take place, our supporter was ahead and she would be able to continue with contacted by the community event team to her fundraising for . And she say they were sorry that she would not be able had set in motion a programme to raise to have a stall due to the flashing Christmas greater awareness of epilepsy in the future. lights decorating the centre. They feared We regularly put out messaging about it might trigger a seizure, but they would through social media refund her money. and direct communications . But nothing is Our supporter was aghast. "I do have as powerful as the voice of someone with photosensitive epilepsy," she explained, "but epilepsy who is prepared to be an they were not aware of that. I pointed out that ambassador for the condition and turn there could be many visitors to the fair with a situation on its head. epilepsy and that, in fact, only a very small It is a brilliant example of empowerment number of people are photosensitive. and what one individual can achieve. And, "I also pointed out that under the Equality in fact, empowerment was the theme of our Act, they should not discriminate against annual conference this year (see page 11). someone with a disability but should make Bringing about change is not always easy, reasonable adjustments to enable them to but even a small change is very worthwhile. take part in the fair." Happy Christmas and a happy New Year. Our supporter saw the situation as an opportunity to educate the management Nicola Swanborough team, and the community centre manager Editor

Front cover Editor Nicola Swanborough Epilepsy Society The impact of climate change on the Email [email protected] Chalfont St Peter, Bucks SL9 0RJ planet is well documented. But what Telephone 01494 601 417 epilepsysociety.org.uk is its impact likely to be on the brain, To receive Epilepsy Review, email us at the address Registered charity no 206186 particularly for people with epilepsy? above, or see back cover A company limited by guarantee Our Director of Genomics, Professor Registered number 492761 Views expressed by contributors in this publication Sanjay Sisodiya, explains why doctors are not necessarily those of Epilepsy Society Designed by Dugdale Design Ltd must ensure their working practices bendugdale.com do not have an adverse effect on the Information may change after printing and is not health of the people they care for. a substitute for advice from your own doctors. Printed by Rapidity Epilepsy Society is not responsible for any Rapidity.com Image: iStock by Getty Images actions taken as a result of using this information Printed on chlorine free paper from sustainable forests Anti-slavery policy: epilepsysociety.org.uk/anti-slavery-policy

2 Epilepsy Review issue 23, 2019 NEWS MEDICATION Cannabis-bases medicine MEDICATION SHORTAGES approved on NHS Epilepsy drugs in short supply ews that the cannabis- guidance, the drug advisory body, A 24-page document circulated based medicine, NICE said the cost per patient was to doctors by the Department of Epidyolex, has been too high. The manufacturer, GW Health and Social Care (DHSC) approved for use by NHS Pharmaceuticals, has now agreed listed many NHS drugs which are NEngland, has been cautiously a lower discounted price with the currently in short supply, including welcomed by Epilepsy Society. NHS. And NICE has issued new some medications for epilepsy. Epidyolex has been given the guidelines. The document was leaked in green light for the treatment of two Professor Ley Sander said: the media, without specifying severe forms of epilepsy that begin “News that NICE is recommending which medications were affected. in childhood, Dravet and Lennox the use of the pharmaceutical grade The DHSC has informed Gastaut syndromes. It is estimated CBD in the treatment of those Epilepsy Society that the two there are 3,000 people with Dravet with Dravet or Lennox Gastaut epilepsy medications on the list are and 5,000 with Lennox Gastaut syndromes, will bring hope to Epanutin (phenytoin) and Carbagen syndrome in England. many families affected by these (carbamazepine). Epidyolex has been approved two severe forms of epilepsy. Both There have been ongoing issues for use with clobazam in the syndromes remain stubbornly with both medications, as reported treatment of convulsive in drug-resistant, often leaving at epilepsysociety.org.uk/ and drop seizures families feeling quite desperate. medication-updates, and shared in Lennox Gastaut syndrome. “The need for new treatment on social media. The charity’s Medical Director, options is unquestionable and it Epanutin Infatabs 50mg are Professor Ley Sander, said that the is reassuring that the medication currently out of stock. Pfizer is news would bring hope to many has been through clinical trials importing a generic form of families but that the long-term and regulatory processes. But the Epanutin from Canada – Dilantin effects of the drug on the brain, time frame for these means we Infatabs – to replace these. were still unknown. still cannot be certain of the long- Dilantin is unlicensed in the UK. Epidyolex is a pharmaceutical term efficacy of this CBD product It will be available until mid-2020. grade cannabidiol (CBD) derived or what its effect might be on the Carbagen 200mg and 400mg from the cannabis plant. Although developing brain. It is important to Immediate Release Tablets and it contains CBD, it does not contain remember that this is not a magic Carbagen 200mg and 400mg THC, the psychoactive component bullet. Like other anti-seizure Modified Release Tablets are also of cannabis. medications, it is likely to work unavailable until the first quarter Clinical trials have shown that for some but not for others. of 2020. Novartis, manufacturer the drug could reduce the number "I hope that this will pave the of Tegretol which is the alternative of seizures significantly in some way for more robust research brand of carbamazepine tablets, children. into other medicinal cannabis have confirmed they can support Epidyolex was approved for use products with potential anti- additional demand for all affected in Europe in September, but in draft seizure properties.” strengths and formulations.

Take part in our And Pregnancy Awareness Survey

Are you a woman or girl under 55 the baby being born with a physical who is taking, or has taken, sodium or neurodevelopmental disability. valproate since 1 August 2018? New regulations around We want to find out how much prescribing sodium valproate (also women and girls of childbearing known as Epilim, Episenta, Epival, age know about the risks associated Convulex, Depakote, Kentilim, with the epilepsy medication during Orlept, Syonell, Valpal and Valproic pregnancy. Please help us by taking acid) were introduced in April 2018. part in our survey at epilepsysociety. The survey has been launched by org.uk/SVA-survey the three charities Epilepsy Society, For every baby exposed to and Young Epilepsy. sodium valproate during pregnancy, Never stop taking sodium valproate there is up to a 40 per cent risk of without consulting your doctor. Epilepsy Review issue 23, 2019 3 MOBILITY RESEARCH Blue badge AI could offer more hope of surgery extended Epilepsy Society welcomed a Machine learning – or artificial “Our research promises real Government decision to extend its intelligence – could offer more long-term hope for people with Blue Badge scheme to people with people with epilepsy the chance of epilepsy whose seizures do not hidden disabilities such as epilepsy. undergoing potentially life-changing respond to current medication. It is the biggest change to the brain surgery, says a new study. If machine learning can open the scheme since the 1970s and Every year 1,000 people are door to surgery for more people, extends the eligibility criteria to identified in the UK as suitable then there is a greater chance of include anyone who cannot walk candidates for epilepsy surgery. them enjoying a seizure free life.” as part of a journey, without These are people whose seizures Clare Pelham, Chief Executive causing considerable psychological do not respond to current at Epilepsy Society commented: distress or risk of serious harm. medications. However, 300 of these “This is a very exciting study that Clare Pelham, Chief Executive will have normal MRI scans that do demonstrates the huge potential of at Epilepsy Society said: “Epilepsy not show the focal point at which cutting edge technology when it is can cause significant difficulty for the seizures start, meaning they applied to very real medical issues. people when walking long cannot easily be considered for “Hope can be in very short distances, and this change will surgical treatment. supply for people whose seizures go some way to making their Now a new research study has are not controlled by today’s lives easier.” shown that artificial intelligence is treatment options. It is very The extension to the scheme is able to read subtle abnormalities encouraging when our scientists part of a drive for greater parity on scans that appear completely are able to harness the potential between physical and mental health normal to the human eye. And this of 21st century technology to bring which includes plans for fully could help to guide potentially the promise of seizure freedom accessible transport. curative brain surgery in the future. within the grasp of many more.” The scheme is not condition- The team from Epilepsy Society, The research, published in specific and eligibility depends on UCL and King’s College, Epilepsia, is led by Dr Gavin how a person is affected by their have developed a visualization Winston, Honorary Associate condition. A person’s mobility will technique called ‘Importance Maps’ Professor at UCL Queen Square be considered following criteria to help identify the cause of Institute of Neurology and now an used for Personal Independence epilepsy in some of the most Associate Professor at Queen’s Payment (PIP) and Disability Living challenging cases. University in Kingston, Canada. He Allowance (DLA). Dr Gavin Winston, Honorary is working with Drs Oscar Bennett Where anxiety is an issue, this Associate Professor at UCL Queen and Baris Kanber and colleagues at must be evidence based. An Square Institute of Neurology said: University College London, Epilepsy applicant would need to prove that “Every day we see people in our Society and King’s College London. they are undergoing a treatment clinics whose lives are limited by Their work was funded by the programme for their anxiety at seizures. These can impact on their Medical Research Council, Sobell a hospital and that they have education, employment and Foundation and the Engineering appropriate psychiatric or personal lives. And, of course, and Physical Science Research psychological reports. having seizures means not being Council. The Blue Badge is awarded to an able to drive which is one of the https://onlinelibrary.wiley.com/ individual and does not require the biggest impacts for people. doi/10.1111/epi.16380 person to have a driving licence or be the driver. Nor do they need to be PHARMACIES over the age of 17. This means that even if a person with uncontrolled New electronic prescriptions seizures cannot drive, they can A new electronic prescription service can get a paper prescription with a apply for a badge which can then (EPS) has been rolled out across digital barcode. Paper prescriptions be used by a carer, family, friend or England after a trial run in 60 GP will remain available for those who taxi, as long as the badge holder is practices and hundreds of rely on them, but most prescriptions in the vehicle. This was already pharmacies. will be processed electronically. specified as part of the scheme. The new system means that Repeat prescriptions can people can get their medication in continue to be ordered in the normal To find out whether you are one of two ways. They can nominate way, but they will be sent direct to eligible for a Blue Badge, a pharmacy that will receive their the pharmacy or dispenser chosen search ‘Blue Badge’ at gov.uk details direct from their GP. Or they by the person.

4 Epilepsy Review issue 23, 2019 Watch it on video Idris Elba is our super-hero You can find these videos at youtube.com/epilepsysociety

Richard explains why our Helpline is so important to him, and why it should be open five days a week. See page 16.

Catch up with all our videos

Image: Harald Krichel creativecommons.org Image: Harald from Epilepsy Society's Annual Conference 2019. Epilepsy Society has hailed actor Idris Elba a super-hero after he stopped his play, Tree, mid- MEDICATION SHORTAGES performance to help a woman in the audience who was having a seizure. Where to And the 46-year-old Luther star stayed with her until paramedics find the latest arrived. You can read the full story information at the link below. Uncertainty still remains about Our Chief Executive, Clare when the UK will leave the epilepsysociety.org.uk/idris-elba Pelham talks on ITV News after European Union, and what sort a young woman is mugged at a of deal this will involve. Brexit bus stop while having a seizure. negotiations have been extended Epilepsy Society is working until 31 January 2020, but the UK closely with the Department of can leave as soon as the withdrawal Health and Social Care's medicines agreement is completed. supply team so that we can keep There have been many concerns you up to date with news of any expressed about the impact that shortages. Brexit – particularly a no deal You can find all the latest news Brexit – could have on supplies at epilepsysociety.org.uk/ of medications, including those medication-updates You can also for epilepsy. read about contingency plans for In the last year we have seen an different epilepsy medications in increasing number of shortages of case of a no-deal Brexit. And our Our Chief Executive, Clare epilepsy medications. Although we Medical Director, Professor Ley Pelham, talks on ITV News know that these pre-date Brexit, Sander talks about how to cope Granada about the impact of we also know that leaving the if there is a shortage of your medication shortages. EU has added to anxieties. particular medication.

Epilepsy Review issue 23, 2019 5 YOUR STORIES

Me and my epilepsy Louise Berry

Louise was written off by her school levetiracetam which helped to control my seizures and at 38 because of her epilepsy. She was told weeks, Millie was born by caesarean section, a healthy baby to get an office job so her seizures girl. Ley was then able to really start looking at how best to keep wouldn’t scare the public. Then ‘miracle my seizures under control. baby’ Millie helped turn her life around. Sports science Unfortunately my local Primary Care Trust decided they would no Miracle baby Positive approach longer pay for me to go to Queen I was about 26 when I found out My epilepsy was very unstable and Square so I was referred to Queen that I was pregnant. It was quite I’d been through many medication Elizabeth Hospital in Birmingham. a surprise as I had previously had changes. My Mum and Dad didn’t My seizures finally settled and a coil fitted and wasn’t planning on know what to do. Nothing would I decided to start studying for a starting a family. My seizures were bring my seizures under control. degree in sports science. all over the place. I have a complex Then Mum found Professor Ley When my epilepsy was first epilepsy syndrome and I was Sander up at the National Hospital diagnosed I was 12 and at having seizure after seizure – for Neurology and Neurosurgery grammar school. I had a high IQ sometimes partial complex in Queen Square, London. but when the school heard about seizures, sometimes tonic clonics. It was when I met Ley that I my epilepsy, they asked my Having a baby felt like something started to feel more positive about parents to transfer me to a of a miracle. my epilepsy and seizures. He comprehensive school. They said The first time I saw a scan made me feel better about myself grammar school was no place picture of my baby, Millie, she was and more confident. He sent me for someone with epilepsy. sucking her thumb in the womb. to stay at the Chalfont Centre in I always thought she was Buckinghamshire for three days Low self esteem reassuring herself because of all and I underwent lots of tests – My parents fought for me to stay the seizures that she was going EEG, MRI, video telemetry. I was at the school but to be honest through with me. put on a high dose of I had very low self esteem and

6 Epilepsy Review issue 23, 2019 Clockwise from far left: Louise and daughter Millie; Millie as a baby; Louise trekking 25km with gus the Gnome at Pen-y-Fan; Louise standing infront of The Red Arrows.

didn’t do well. I was always having award for my dissertation on Calling the Helpline seizures and would be in trouble sports psychology and disabled When I need to, I call Epilepsy for missing parts of lessons. By sports. I did start doing a PhD Society’s Helpline. Having epilepsy the time I was 15 or 16, I was but to be honest I found myself is about so much more than the pretty vile. I was told I would do struggling with some of the seizures. It is about the side effects badly in my GCSEs and really I learning. I had to lecture under from the medication, the tiredness, gave up on myself. I refused to graduates but when they asked anxiety and depression, and aphasia take my medication and watched me questions, I couldn’t always where I can’t remember words, as my friends passed me by. I felt find the answers, even though names or faces. pretty worthless. I knew them. My professor’s Simple things can be so The careers adviser said I wife had epilepsy so he was very frustrating like when I want my should take a job in an office. She understanding and would often partner to turn on the fire because said I would scare customers if step in and answer for me. I’m cold and I’m looking at the they saw me having a seizure. fireplace but can only think of the Great North Run word ‘fridge’ or ‘oven’. I have to Getting a first I decided to take a leave of absence work my way through the alphabet, I did some temporary agency work and take up running. I have joined trying to find the right word. and got on with my life, but really it a running club and have run a Being able to pick up the phone was when I came to the Chalfont couple of half marathons, and call the Helpline is such a lifeline. Centre and got control of my including the Great North Run. In It is so good to know there is someone seizures that my life turned round. 2020 I will be running in the London there who understands what I am When I started my course at uni, Marathon for Epilepsy Society. going through and will just listen, I was able to access the right help. I still have seizures but I don’t even if it’s just listening to me cry. I got the disabled students’ let them stop me. If I am I always come away from the allowance, bought glasses to help swimming, my mum sits poolside Helpline feeling more confident with the computer and had a tint and the lifeguard is aware of my in myself and that things will fitted to dim the screen slightly. epilepsy. When I am running, either be ok again. I also had software installed so someone from the club comes that the computer would be audio. with me or Millie trails along uk.virginmoneygiving.com/ After three years I got a first behind on her pushbike. We’ve LouiseBerry11 class honours degree and won an done a lot together.

Epilepsy Review issue 23, 2019 7 FAMILY A father’s grief

It is almost a year since Hamish Roberts lost his beautiful daughter, Amelia, to a fatal seizure. Here the heartbroken father talks about his journey through grief and his struggle to rebuild his family without the vivacious, funny 21-year-old

rief is such a short past few months I have struggled a normal life, but the drugs used word. ‘Armageddon’ and to cope and never cried so much, to control her fits, did. ‘catastrophe’ seem far be it from exhaustion, worry, She lost her buzz, her impish more proportionate in sadness, shock, the sympathy humour, her motivation. She was Gthe length-to-impact ratio, but I’ve of others or that I will never see not allowed to drive and we could learnt that, though short, the word, Amelia again. At times, I have sense the hurt as she watched her ‘grief’ carries a punch. A few days felt totally out of control. sisters pass their tests. Her before Christmas, as my family Is that how you are meant to consultants tried one drug after gathered at home in Hertfordshire, feel? Who knows – you so rarely another, to no avail. Amelia was my middle daughter Amelia was hear men talk about grief? I have classed as drug resistant. She had found by her sisters under water come to realise that grief – for me tried 15 of the 25 known drugs. in the bath. At first we believed at least – has four distinct stages. In spite of all that, she secured Amelia had drowned but she had Firstly, let me tell you about a place to study at Portsmouth in fact died – suddenly and Amelia. She was funny, loving, University. We worried about her shockingly – of an epileptic seizure. stoic, beautiful and intelligent. She when she got there, especially as Epilepsy is a condition involving loved drama, choral music and she began to experience Grand irregular electrical short circuits lacrosse. From oysters to water Mal seizures. They were in the brain. It isn’t curable or skiing, she would try anything frightening, as Amelia would drop contagious, but it can, in some once. Her defining feature, to the floor without notice, like a cases, be controlled. Around 25 however, was her gentleness. felled tree. She broke her jaw on people a week die suddenly from a A few years ago Amelia started one occasion and would often seizure. We had absolutely no idea to describe feeling “funny” now have cuts and bruises. that Amelia was to be one of those. and then. We didn’t think much We all assumed she would My wife Debs and I have three about it until a friend took her conquer the condition either with beautiful daughters, Lily, 24, Amelia, out to eat while she was on work drugs or even surgery. Then, on 21, and Kitty, 18. Or should that be experience. When he asked her 20th December, Amelia suffered a “had” now there are only two? I’m what she wanted, she just stared terminal seizure. This is technically not sure of anything any longer. at him and mumbled. known as Sudden Unexpected Before December 20th I was It turned out Amelia had Death in Epilepsy or SUDEP. bobbing along quite nicely. I had epilepsy. Her condition took the Although we had heard about a good job, a lovely home and a form of Petit Mal seizures, during SUDEP, like most families, we loving family. As the pieces of my which she would “zone out”. brushed over the subject. How on life have begun to land over the Her fits didn’t stop her leading earth do you even begin to address

8 Epilepsy Review issue 23, 2019 the thought that your daughter could suddenly just die? Stage One of my grief was coping with the immediate aftermath, planning how to bury Amelia and organise her funeral. Writing and delivering a eulogy that could come even close to describing my lovely girl was the most difficult thing I have ever had to do. Talking to the coroner, talking to the vicar, I survived on vapour. I was numb and empty. Most difficult was the outpouring of grief from others. We were inundated by people and letters. Amelia’s death was shocking. She was so beautiful, she was so young and had died I am so pleased I had the Amelia’s name. If she had gone just before Christmas. courage to do this. through their programme, she Responding politely and I have tried to sell myself might still be here. sympathetically was difficult. I was another version of Amelia’s death: I tell myself I am still blessed tired, worried and needed space it could have been worse, she in many ways. I am so fortunate to talk to my family. On a couple could have suffered for many to have Debs, Lily and Kitty, and of occasions I found myself years or actually drowned. to have loved, and been loved by enveloped in a prolonged embrace A perfectly rational thought Amelia, for 21 years. Stage Four is from some well-meaning person process I suppose, in an attempt rebuilding my family without her, in a way I wasn’t accustomed to. and I am beginning to look forward Stage Two was the nervous Delivering a to a future where we are calm and re-emergence into the world. can have fun without guilt. Love Back to work. My company was eulogy that and trust will be the foundation extraordinary in handling this. could come even stones of my family: two short Colleagues gave me a lot of space. words that also have a I found a grief counsellor who close to describing disproportionate score on the told me I was suffering from letter-count-to-impact ratio. post-traumatic stress disorder my lovely girl was (PTSD). I felt light-headed, a the most difficult Fundraising Supporter Group combination of a severe hangover Amelia's family are Epilepsy and jet lag. My chest hurt, to the thing I have ever Society's first Fundraising point I felt I was having a heart had to do attack. I had terrible shakes, Supporter Group. This enables headaches, heart palpitations to placate, but the simple truth friends and families to raise and night sweats. is that I lost my beautiful daughter. funds in memory of a loved I took a month off work. Stage An utter tragedy. one, in honour of someone Three. Switched off. Ignored Amelia sought comfort and living with epilepsy, or simply everyone. Exercised. Stopped advice from the Epilepsy Society. to support our cause. Benefits drinking. Drank vegetable and fruit Unbeknown to us, she left them include: a bespoke logo; a juice and did a lot of thinking. This her brain for research. Such a page on our website; support may sound selfish, but I was mature gesture for a 21-year-old. from our team; and a chance useless to all those who depended The Epilepsy Society has an to restrict funds to an area that on me. As they say during the amazing genomics project that inspires them. safety announcement on the helps them deliver the correct To set up a supporter group, plane, “Put on your own oxygen combination of drugs by looking go to epilepsysociety.org.uk/ mask before trying to help others”. at a patient’s eyes, brain activity, groups or call 01494 601313 I have spent a lot of time recently facial muscles and sequencing the thinking about my life and what individual DNA. This project costs Amelia’s death means and will more than £I0 million and most of This article first appeared in The Telegraph. Turn the page to read about Epilepsy mean to me. It has been both their funds come from fundraising. Society’s research into Sudden Unexpected therapeutic and terribly sad. We have raised nearly £80,000 in Death in Epilepsy.

Epilepsy Review issue 23, 2019 9 RESEARCH

How brain tissue is helping us to understand SUDEP

Examining brain tissue is one of Sequencing brain tissue will allow us to use Nanostring the most important ways to help Our brain tissue samples are technology to analyse information us investigate the mechanisms preserved in one of two ways. about gene expression. responsible for Sudden They are either fixed in formalin Unexpected Death in Epilepsy or they are frozen. Donating her (SUDEP). Which is why we are Brain tissue samples donated brain for research so grateful to all those who, like to us following a person’s death, Amelia Roberts (see previous are most commonly fixed. While was an amazing thing page) consent to donate their these are suitable for studying for Amelia to do. We brains, at the end of their lives, the microanatomy of cells and to our Epilepsy Society Brain tissues, it is not so easy to are very grateful for the and Tissue Bank. sequence their DNA or RNA (the knowledge that this is part of a cell that converts genetic helping us to accrue Understanding SUDEP information of DNA into proteins). By studying brain tissue samples New technologies are now and the lives that might we have been able to establish available that will allow us to ultimately be saved by a potential link between SUDEP analyse the DNA and RNA of fixed her selfless donation. and a depression of the central tissue samples, offering the respiratory system following potential to enrich our knowledge Amelia’s family should a seizure, and a link between of the process by which epilepsy feel very proud. serotonin pathways and the risk develops within the brain. of SUDEP. Serotonin transmits One of these platforms is Clare Pelham, messages between nerve cells called ‘Nanostring’ and is available Chief Executive, Epilepsy Society and is also thought to play a role through our academic partners, in functions such as heart and UCL. Now we want to extract Find out more about donating your brain for research at the end of your respiratory rates. DNA and RNA from fixed tissue life, at: epilepsysociety.org.uk/ samples and see if their quality how-become-donor Brain inflammation and SUDEP We have also studied neuroinflammation in SUDEP. Brain inflammation is thought to be significant in the excitability of neurones and the progress of epilepsy in the brain. In a pilot study of 55 samples, we were able to see a significant increase in neuroinflammation in cases involving SUDEP, compared to those with epilepsy but without SUDEP and to disease-free controls.

10 Epilepsy Review issue 23, 2019 YOUR GUIDE Annual Conference

Epilepsy Society’s Annual Conference is always a highlight of our calendar year. Every day we engage with a community of some 100,000 supporters across our many digital platforms but there is nothing quite like being in a room and having a chat with people – real time – over a cup of coffee.

Our annual conference provides subjects and help you cope multi-coloured abstract art, a chance to catch up with old through information, hopefully inspiring others to pick friends as well as making new understanding and shared up a paintbrush or find a hobby ones. And this year was no experiences. You can read that could help to express their exception. excerpts from the speakers' emotions and increase well being. The theme was “Empowering presentations over the page. We were also thrilled to be You.” Sometimes seizures and the We also invited a representative joined by Epilepsy Society’s two impact of epilepsy, can leave you from Transport for London (TfL) professors, Ley Sander and Sanjay feeling a little out of control. So to talk about the work they are Sisodiya, who updated us on the we wanted to help you gain back doing across London’s networks latest developments in epilepsy that control, wherever possible. to improve accessibility for people research, where the future lies and We know from calls to our with hidden disabilities. You can the progress that we are making Helpline and online enquiries just read how TfL is working with in genomics. how worried people with epilepsy Epilepsy Society to ensure that We have had some excellent are about the current medication anyone who has a seizure on the feedback from the conference and shortages and problems with tube, receives correct treatment. if you weren’t able to join us, you applying for benefits. And we Artist Amanda Smith joined us can catch up with our videos at know how many people with to discuss how art helps her cope epilepsysociety.org.uk/annual- epilepsy also have to cope with the anxiety and depression conference-2019 with anxiety and depression. she often experiences as part of Watch this space for next year’s So we invited experts from her epilepsy. We were treated to conference and make sure you join all three fields to tackle these a wonderful display of Amanda’s us. We’d love to see you there.

Epilepsy Review issue 23, 2019 11

"People with epilepsy have a 1 in 3 chance of developing anxiety Genetics research update Anxiety and depression or depression."

“We are carrying out research “People with epilepsy have a 1 in 3 (CBT) as treatments for both for the simple reason that chance of developing anxiety or anxiety and depression. While there are still people living depression in their lifetime. This counselling is a listening space, with uncontrolled seizures. compares with 1 in 6 in the CBT is a more structured Genetics is helping us to general population. And 1 in 2 programme that challenges understand epilepsy at a much people will not be treated for negative thought patterns. deeper level. And in some cases their anxiety or depression. “These are both talking it is helping to guide precision “There are many reasons therapies and referral on the medicines tailored to the for anxiety, including seizures NHS can be through a GP or you individual. themselves. Seizures are can self-refer. Search online for We have been working unpredictable – you don’t know ‘Psychological Therapies (IAPT).” with our partners at Genomics where or when they might happen England to sequence DNA – and this can be very stressful. Dr Pam Thompson, Consultant samples from 1,100 people “NICE recommends counselling Clinical Neuropsychologist with epilepsy. So far we have and cognitive behaviour therapy Epilepsy Society the results back from 10 per cent of those samples, and for 1 in 3 people we have established a genetic diagnosis where there had not been one before. Our aim is to bring genetics into clinical use as we did with MRI so that it is available to more people across the country. We are already pioneering this with our own epilepsy genetics clinic. But we can only see eight people per month at the moment. We There are some simple are making good progress, but Medication shortages things which people can do to we’re not there yet.” help themselves if there are “The medicines supply chain is medication shortages: Professor Sanjay Sisodiya, a very complex, fragile system • Take your prescription to your Director of Genomics, and shortages can occur for local pharmacy in good time Epilepsy Society many reasons such as problems • Don’t stockpile your own with accessing raw ingredients medication at home or a fire in one of the factories. • Ask for a separate prescription Pharmaceutical companies have for your epilepsy medication so been asked to ensure they have that if you have problems at an extra six weeks’ supply of your local pharmacy, you can medications in preparation for take it to another pharmacy a no-deal Brexit. And this extra buffer will stay in place as long Sandra Gidley, President of the as it is needed. Royal Pharmaceutical Society

12 Epilepsy Review issue 23, 2019

but I then went on to Las Vegas and basically I don’t remember anything. On one night I fell down 51 marble steps and lost half of my head. The funny side "People with is that every time I go through an airport, absolutely everything epilepsy have a goes off. The bad side is that 1 in 3 chance of I have aphasia alongside developing anxiety seizures.” or depression." Living with epilespsy Tom Ryan-Elliott, Discoveries Epilepsy Society “Back in 2004 I went to San Ambassador “Our gut microbiota (microbe Francisco. It was a great trip population living in our gut) contains tens of trillions of organisms and seems to play a central role in our health. There is preliminary evidence coming about gut microbiota and epilepsy.”

Professor Ley Sander, Going underground Medical Director at Epilepsy Society

The benefits system

“From the cradle to the grave, at some point in our lives, all of us will come into contact with the benefits system. One of the most important things to understand Painting epilepsy is where having a health Lauren Preteceille, Head of “Through art therapy I am trying condition like epilepsy leads to Stakeholder Engagement and to find out who my true self is. certain aspects of the benefit Advocacy at Transport for London Who is that person from who I system that are relevant to you talked about their work with was before my epilepsy. It is a – things you can access and get Epilepsy Society. real journey of discovery on the help from. canvas. I don’t see myself as an “If you are financially struggling • TfL has shared our Calm, acclaimed artist. To me it’s just and there is help available, the Cushion, Call campaign to ensure paint on a canvas.” most empowering thing is to that staff know what to do if access that help and to someone has a seizure on a train Amanda Smith, artist understand it.” • Our Medical Director Professor Ley Sander has worked with TfL Alban Hawksworth, to check that new blue, under- benefits expert You can enjoy platform lighting does not pose a risk for anyone with videos of many photosensitive epilepsy of the conference • TfL featured Epilepsy Society’s ambassador Tom Ryan-Elliott as presentations at: their poster boy for their ‘Please offer me a seat’ campaign epilepsysociety.org.uk/ • Epilepsy Society spent a day on annual-conference-2019 the London Underground updating staff on seizure first aid.

Epilepsy Review issue 23, 2019 13 ENVIRONMENT Flying doctors?

Not such a good idea, say neurologists who fear carbon emissions from air travel to conferences are having an ill effect on the health of the people they care for. Nicola Swanborough explains

n July next year, our neurologist, healthcare, and particularly on those Dr Simona Balestrini will travel with epilepsy. Flying is a significant to Geneva for the European contributor to carbon emissions Epilepsy Congress. There is – a key factor in global warming. Inothing unusual in this. The “As neurologists we often have epilepsy congress is an important to fly around the world to present date in the calendar when experts our research, network and form in the field of epilepsy share their collaborations for genomic latest research. The difference is research,” says Simona. "But I think that this year, rather than flying to the time has come to look at other Geneva, Simona and other young ways to travel and meet up.” neurologists from across Europe, The original plan had been for will be arriving by bike. the neurologists to cycle the full Simona is one of a growing 600 miles from London to Geneva, number of neurologists who are but time constraints have forced concerned about the impact that them to make their plans more climate change is having on realistic. Instead the neurologists

14 Epilepsy Review issue 23, 2019 from the UK and across Europe, suitable for mosquitoes that will now travel to Bern in "We can't undo the transmit malaria associated Switzerland by train and then cycle with epilepsy and seizures. the final 100 miles to Geneva. damage we've Temperature changes are “This is undoubtedly a big already done, but we known to affect genes and proteins. commitment, but it is a chance Anecdotal evidence from the to show there is another way to can wake up to just patient support group, Dravet exchange information, ideas and how fragile the planet Syndrome UK, has shown that the scientific knowledge,” says Simona. unusually high temperatures of “As doctors we must take a lead is." Sanjay Sisodiya summer 2018 resulted in more in ensuring that our work practices seizures in children with this rare and lifestyles do not have a reduce the impact of global warming. condition, caused by a mutation detrimental effect on our patients.” The neurologists, including in the SCN1A gene. Simona is the Muir Maxwell Professor Sanjay Sisodiya, Director Although evidence is still Research Fellow at Epilepsy of Genomics at Epilepsy Society, scarce, there are concerns that Society. She is reminded on a daily have formed a consortium called a rise in temperatures could put basis of the injustice that the ‘Epilepsy Climate Change’ to tackle some anti-epileptic medications impact of climate change is likely some of the effects of this. at risk of degradation. Medicine to have on people with epilepsy. In an article in the journal supply chains may be compromised “Every day in clinic I see people Epilepsia Open, ‘Climate change and loss of biodiversity such as with epilepsy who cannot drive and epilepsy: time to take action’, plant, microbial and fungal because their seizures are members of the group spell out species, may threaten potential uncontrolled. For many this means key alarm bells: sources for new epilepsy drugs. that employment opportunities are • Climate change is already Climate-driven food and water limited, and holidays abroad are affecting healthcare, and could stress may lead to worldwide seldom an option. overwhelm healthcare systems conflicts, resulting in increased “Consequently, people with • Warming and humidity changes head injuries and epilepsy. uncontrolled seizures are likely to will affect human disease risks Sanjay admits that the picture be among those with the lowest • Many of the accompanying looks bleak, but he is adamant carbon footprint and yet, on a environmental, infrastructural there is hope. global scale, they are likely to be and socioeconomic changes will “We can’t undo the damage most affected by climate change.” adversely impact the . that we have already done,” he According to the Joseph Sanjay explains: “There are says. “But we can put the brakes Rowntree Foundation, 10 per cent 50 million people living with epilepsy on and wake up to just how fragile of the wealthiest households in worldwide and 80 per cent of them our planet is. It’s about education, Great Britain generate three times live in low- and middle-income realisation and acceptance of the as much carbon emissions as the countries. It is these populations role we all play – and the better poorest 10 per cent. Doctors are that are likely to be disproportionately role we could play.” likely to be in the wealthiest group, affected by climate change. Sanjay has already committed while many people with epilepsy “Diseases spread by vectors like to walking or running rather than are in the poorest group. It’s a mosquitoes can cause epilepsy using his car wherever possible. disparity that does not sit or seizures in the acute stage. If He keeps his office at an ambient comfortably with many doctors. climate change leads to the spread temperature; turns off his Three of the world’s leading of these vectors, then the risk of computer at the end of the day; are challenging infection-related epilepsy will and he is determined to find new medical professionals – and increase. We have recently seen ways to work with colleagues themselves – to fly less for how the outbreak of diseases such across the world. international conferences in order to as Ebola and Zika viruses can "Teleconferencing still falls overwhelm a healthcare system.” short of the personal touch but we And it is a problem that could must apply our brains to finding Flying is a easily hit closer to home. Studies solutions that will advance science suggest that just a 1°C increase in but not cost the earth,” he says. significant temperatures could result in some Meantime Simona is busy contributor to vector-borne diseases associated training for her longest ever with epilepsy being transmitted journey to an epilepsy congress. carbon emissions in the South East of England Following a 10-hour journey to – a key factor in by 2070-2100. Bern, she estimates the bike ride By 2030, the southern half of to Geneva will take her and her global warming Great Britain could be climatically colleagues three days.

Epilepsy Review issue 23, 2019 15 APPEAL

Help us open our Helpline 5 days a week

We need to extend our Helpline opening times from three to five days a week, giving more people more time to talk. But it costs money. This year, thanks to a generous donor, every gift donated to, or raised for, our Helpline Appeal before 31 December 2019, will be matched, pound for pound. Andrée Mayne explains why this is so important

hursdays and Fridays are emotional support on a Thursday The great news is that a the most worrying days of or Friday, having to wait until fantastically generous donor has the week for us at Epilepsy Monday to talk to someone who agreed to match, pound for pound, Society. Our Helpline isn’t understands, is just not good the first £62,500 we raise before Topen but we know people will be enough. 31 December 2019. ringing us and not getting the If you are looking for So, for example, if you were help they need. information, perhaps about able to give £20 today, it would For the last three years, benefits or medication, waiting unlock another £20 from our frustratingly, we have only been four days to call us, can result donor. With Gift Aid added, you able to open our Helpline three in increased anxiety. would be contributing an amazing days a week ,from Monday to £50 towards the £62,500 we need Wednesday. But we are keen We’re answering to raise by the end of the year. to restore the Helpline to a full This incredible match funding service so that we can be here around 3,000 calls opportunity means that if you were for you five days a week. every year and to hold, for example, a cake sale, Epilepsy Society’s Helpline is raffle or sponsored carol sing- already in huge demand. We are respond to around along before 31 December, all the answering around 3,000 calls 2,700 emails. money you raise for our Helpline every year and respond to around appeal would be more than 2,700 emails. However, if we can So, we have launched our doubled. open five days a week, we could Helpline Appeal with the sole Susan’s story, opposite, really answer an estimated 2,000 aim of making sure that there shows the value of our Helpline. additional calls every year from is someone there for you to The thing that Susan needed more people who urgently need our talk to five days a week. than anything else, was to be able support. With your help, we have already to talk and to be listened to. She Epilepsy has no respect for raised half the money needed to needed to share her fears and time or occasion. Seizures happen enable us to operate a five-day find her own way forward. out of the blue, with rarely any service next year. But now, we I don’t know how Susan would warning. We know that if you need need to raise another £125,000. have coped if we hadn’t been there

16 Epilepsy Review issue 23, 2019 to pick up her call that day. Especially since, to my knowledge, there is no other helpline service quite like ours. People with epilepsy, their families and friends are free to talk to us about any epilepsy-related Help us open our Helpline issue, and they can stay on the phone for as long as they need to. Our aim is to listen and provide support for people to help them to see a way through their current difficulties – just like Susan did. 5 days a week This is what our Helpline is all about and why it is vital that it is open five days a week. We will be very grateful for any gift you are able to share with us, no matter how small. Your donation could mean that someone affected by epilepsy will be able to call our Helpline when they need us. They won’t have to hold on to their worries and Susan’s story anxieties. From the bottom of my heart, as manager of the Helpline, From the moment we Susan’s call lasted nearly thank you. answered Susan’s call her an hour and our helpline voice was shaking. She was operator listened quietly clearly very close to tears. to her concerns and gently How we can double Susan explained that her questioned Susan to help daughter had been having her find a way forward. By the your money... seizures for much of her life time she was ready to put but now that she was a down the phone, Susan was student, living away from much calmer, and she had home, her epilepsy was out resolved to have a heart-to- £20 of control. Susan had just heart with her daughter. from you learned that her daughter was Whatever the future might having several seizures a day hold, she wanted them to and had recently been face it together. + hospitalised. When our helpline operator mentioned to Susan that she Thank you £20 sounded terrified, the so much from our donor floodgates opened. She began crying uncontrollably, for listening. I saying: "I am absolutely have never felt + terrified of losing my daughter and I don’t know able to share my what to do." Susan had fears with anyone £10 always protected her child, gift aid just as any mother would. before, it means But now that she was an so much. I think adult, Susan wondered if her = daughter was now protecting I can deal with her. Did she know something this now. about her epilepsy that she £50 wasn’t sharing with Susan? donation! Might the next seizure be Susan’s name has been changed her last? to protect her identity.

Epilepsy Review issue 23, 2019 17 CULTURE

Brief encounter

A new exhibition takes an intimate look at what it’s like to have epilepsy, through personal testimonies carefully stitched onto Victorian underwear. Nicola Swanborough explains

ictorian underwear may hidden from the public eye,” collection of powerful, moving and seem an unlikely canvas explains Susan. poignant testimonies from people to choose for illustrating “I imagined an installation in living with the condition. Following the lived experiences of which testimonies of people with a call out on social media, the Vpeople with epilepsy. epilepsy were embroidered into artist was inundated with people’s But artist, Susan Aldworth, antique undergarments – chemises, stories describing, often with wanted her latest project Out of nightdresses, bloomers. Garments frightening honesty, the way they the Blue to convey the ‘hidden’ side which, like epilepsy, were concealed feel before and after a seizure and of epilepsy, a condition which is beneath the surface.” what epilepsy means to them. often under-represented in the Susan’s vision is now a reality. media and poorly understood by She has created an installation “The worst part is that no one those with no experience of it. made up of 106 antique garments else notices. It feels like I’m going “I wanted to find a way to embroidered with people’s epilepsy to explode but no one else sees a portray this condition which is – in their own words. thing... I’m just stuck, I’m still so intimately stitched into the lives Susan worked closely with conscious. I can see, feel, and

of those who have it, and yet so Epilepsy Society to build a think. But I can’t do anything. I’m Image: ©Out of the Blue, Susan Aldworth 2019 Abrahams Peter Photography:

18 Epilepsy Review issue 23, 2019 trapped in a body that won’t listen testimonies, describing the reality pulleys programmed by computers to me.” Willow of how they – and their families – to correspond to the algorithms are affected by the condition. of electrical activity in an epileptic “After a seizure my head feels “I was really blown away by their brain. And the fluorescent like it has been smashed against a responses,” says Susan. “They embroidery is lit by both natural brick wall and my whole body described their lived experience and ultraviolet light to reflect the aches. My epilepsy nurse once told of epilepsy with amazing candour scientists’ light-sensitive gene me she had a patient who was hit and detail. Their testimonies are therapies. by a bus and they said that was incredibly emotional and real.” All the Victorian garments have less painful than a seizure.” Sophie been embroidered with an edited, individual testimony on the front “As an artist I really wanted to 106 antique and a single word on the back. explore how it makes people feel garments The Royal School of Needlework to have epilepsy and what it is set Out of the Blue as a first-year like to live with it,” continues embroidered with BA embroidery project with 35 of Susan. “I wanted to give people people’s epilepsy, its staff and students taking part. with epilepsy a voice and bring the Other embroiderers joined the condition out into the open. in their own words. project resulting in 106 volunteers “When we ask the question slowly and painstakingly ‘what is epilepsy?’, there can be Out of the Blue was committing the words to the many answers. For the scientists commissioned by the Institute historic canvases. and doctors seeking an effective of Neuroscience at Newcastle “It feels a privilege to represent treatment, it’s a neurological University and is funded by the the stories of people with epilepsy conundrum that might have a Wellcome Trust. Scientists at in this way,” says Susan. “I hope solution. the institute are developing that it will help to spread greater “For most of us, by contrast, it’s experimental treatments for awareness and understanding just a word. Although it affects one epilepsy that use optogenetics, a of the condition.” in a hundred people, it gets few biological technique that controls headlines and we know little or the activity of neurons in the brain, nothing about it. In many ways using light and genetic engineering. it’s a hidden condition. While Susan’s work explores the Out of the Blue is at Hatton “But for those who have human side of epilepsy, the science Gallery Institute of epilepsy, it is something else. is also reflected in her work through Neuroscience, Newcastle It is a lived and living experience. the light-sensitive thread used to and runs from 18 January For them, the question is more sew the testimonies. – 9 May 2020. A limited personal: what is it like to live with Each of the garments is edition book is available by epilepsy? Only they can answer it.” stitched in ultraviolet yellow, light contacting saldworth.t21@ Almost 100 people responded blue and black. These are then btinternet.com to Susan’s request for personal suspended from the ceiling on

Photo: Ana Arca 2018

Epilepsy Review issue 23, 2019 19 FUNDRAISING Fundraising in my DNA

Kat Smith, 34, tells Since my diagnosis in 2010, I have found that Epilepsy Review why triggers for me can be drinking excess alcohol, she abseiled 540 feet stress and tiredness. When I was diagnosed, down Broadgate I was living with a partner Tower in London for and epilepsy completely ruined my life. My Epilepsy Society relationship broke down, I had to leave my job and I couldn’t drive for 'm grateful that I’ve been a year. It was really horrible. seizure-free for over a year, but I was living in Lancashire my journey with epilepsy hasn’t at the time and moved been easy. If I had not sought back in with my parents Ihelp and been given the right in Nottinghamshire. medication, I fear I could’ve died Initially, I was on from having an epileptic seizure. medication which ‘knocked The risk of SUDEP – Sudden me out’ and then I was Unexpected Death in Epilepsy – switched to a tablet that is always a worry for me. stabilised my epilepsy. It’s Nobody in my family has one I will stay on for life. epilepsy. When I started to have I am now a mum to seizures, I did not know that I’d had two-year-old Jack, and a seizure. I’d wake up on the floor I work in marketing for a with blood in my mouth and I’d mental health company have hit my head. I wondered what in Derby. had happened. I know that I’m one of I began to see a neurologist the lucky ones, I can live normally. at the Royal Derby Hospital who I know others who can’t, some help those whose lives have been confirmed that I have generalised who need surgery to control drastically changed. The more epilepsy and experience tonic- their epilepsy, others who literally research into possible cures and clonic seizures. can’t go out medication, the safer the condition I have collapsed on hen do’s, at night because of bright and becomes. convulsing and cutting my flashing lights. I also wanted to support the head open. That’s why I decided to abseil charity’s important services such I’ve also had myoclonic down Broadgate Tower in London , as their information and Helpline. seizures. These gave me a warning raising nearly £600 to help support I wanted to raise awareness sign that I was going to have a full the research that goes into finding of Sudden Unexpected Death seizure, giving me around half-an- new ways to control this in Epilepsy and make sure hour to get to somewhere safe. horrendous brain disorder, and people understand the risks.

www.justgiving.com/fundraising/kat-smith9

20 Epilepsy Review issue 23, 2019 LEGACY

Love lives on Epilepsy Society was part of this year’s Remember a Charity campaign, encouraging people to leave a gift to charities in their Will. Claire Glazebrook talks about the campaign and why it’s not too late to get involved.

hat has former according to Remember a Charity, way that epilepsy is treated for Strictly head judge, only six in 100 people leave a gift generations in the future. Len Goodman got to in their Will to charity. The thing that has impressed do with epilepsy? Since becoming an ambassador people most is how, by leaving just WThe eagle-eyed among you may for the Remember a Charity Week, one per cent of their ‘estate’, they have noticed him earlier this year, Len Goodman has updated his can help Epilepsy Society do backing the nationwide campaign, Will to include a gift to charity – amazing things to support people ‘Remember a Charity Week’, which of course after his own family with epilepsy through research, encouraged people to leave has been taken care of. education, training, individual care a gift in their wills to charity. Now he is hoping others will and the support of our Helpline. Epilepsy Society was part of follow in his footsteps and make We have lots of information and that important campaign with sure that their money will continue guidance at epilepsysociety.org. our own ‘Love lives on’ call out to support causes close to their uk/gifts-wills to encourage people to remember hearts, after they have gone. If you have a family member us with a gift. Our ‘Love lives on’ campaign with epilepsy, you can also find out More than one third of our generated a lot of interest and how you can protect their future voluntary income comes from the support. People called to confirm through a discretionary trust. gifts our supporters leave in their they were planning to remember Thank you for thinking of us. Will and we could not be more the Epilepsy Society in their Will, grateful for this. Money from and others ordered our legacy pack. We always recommend you seek legacies has helped to fund our We have had some wonderful the guidance of a solicitor or legal Helpline, our campaign work conversations with people who adviser when making your Will, to to raise awareness of epilepsy were delighted to know that they ensure your intentions can be and our research into epilepsy. could be such an important part fully carried out. Contact us at The UK is renowned as of our research and could help to [email protected]. a charitable nation and yet, have a positive impact on the uk or call 01494 601414.

Epilepsy Review issue 23, 2019 21 AND FINALLY

Tonic comic

Stand-up comic and all-round funny girl had so much contact and support Juliet Stephens has the last laugh when from the NHS over the years. My relationships with friends and it comes to her epilepsy family are deeper because I have had to lean on them for support and care, and I know hat is your relationship a ‘history’ of epilepsy (because it that the people in my life love me like with your epilepsy? does not feel current) when in truth, because they have worried about I’ve been considering it is a history which has shaped me, visited me in hospital, cared lately how I feel about me to my present day self. for me after a seizure. Wepilepsy now, and how that My relationship with the world is I also believe that having relationship has evolved in the affected by my relationship with epilepsy has given me a positive 28 years since I was diagnosed. epilepsy – it shaped the choices outlook in life. I have regularly I have been reflecting on how I made, and also those that I did not. experienced the goodness in my life journey has been shaped There are jobs I did not take people who have helped and by it, from being at school, then because I could not drive, supported me – ambulance drivers, university and then through my spontaneous trips I did not make A&E staff, medical professionals, twenties, thirties and now forties; because I did not have enough helpline workers, concerned I have lived with epilepsy for twice medication on me, relationships passers-by. I am grateful to them as long as I did not. I ended because my ex was all, and I think I have internalised I didn’t meet epilepsy until I that kindness and I try to pay it was 14, and since then it has been forward. I also think that having a part of my life; sometimes a Epilepsy has epilepsy has given me a kind of frequent visitor, though latterly fearlessness, which has an absent friend (and yes, I say shaped me in strengthened me to make bolder friend!). It has been five years since wonderful ways... my decisions in life and from this my last seizure and though epilepsy perspective, epilepsy feels to have is still a fundamental part of my relationships with been my guide and my cheerleader. story, it’s like the friend who went to friends are deeper Today I am reflecting on three live in New Zealand. I still talk about ‘Good Things’ about living with them and tell new friends about our epilepsy. I’m grateful for my times together in my younger years, spooked by my epilepsy. In my epilepsy ‘parent’ now, as whilst I still but I don’t expect to see them social life, while some friends of definitely had fun and enjoyed my again. Of course I may be wrong, mine were riding the wave of rave student years and my twenties, it but I live my life now as if the friend culture (including taking preserved me from recklessness booked a one-way ticket on Air recreational drugs) I did not that could have been harmful. Keppra and is now a memory. partake, so perhaps some I’m also grateful to my ‘guide/ We humans are creative, friendships drifted, or did not cheerleader’ epilepsy for having inventive creatures, and we express solidify, because we did not have defined my values and my life our relationships to our health and shared experiences. In this regard, goals. Lastly, I am grateful for all bodies in different ways. Many I view my epilepsy as a restriction, the people epilepsy has brought me people personify their health a corset, a curfew. It became a into contact with: everyone I have condition, giving it a name and even ‘parent’ role in limiting things that spoken to and also who have read perhaps a personality. I wonder if I chose to do – things which could my words in this column and maybe any readers personify their epilepsy have had a positive or a negative connected to them. I wish you all well. in a similar way: Stacey Seizure, outcome. Arthur Absence or Myoclonic Martha? I must say that epilepsy has also I sometimes find it a bit strange shaped me in wonderful ways. Juliet Stephens talking to new friends about having My politics are shaped by having Laughing allowed

22 Epilepsy Review issue 23, 2019 NEWS Society matters

Rachel’s run for research Our Director of Medical and People Services, Rachel Perowne had two good reasons to take part in the Royal occasion Great North Run in September. Raising awareness of hidden Rachel was joining her parents, Jeff disabilities such as epilepsy, was and Susan Street, who were taking Dignity goes global top of our agenda when we joined part in the iconic Newcastle run for Staff and people living at Epilepsy the National Association of Local the 15th time, to celebrate their 70th Society celebrated Global Dignity Councils to celebrate 125 years birthdays. And with husband, Roger, Day in October with an event of local councils. Guest of honour Rachel was also raising money to focusing on ‘My Life, My Way’. was the Princess Royal who spoke support our genomic research. Person centred care is a number about the importance of local Twenty runners took part in the one priority at the charity and the government. On hand to meet the race for Epilepsy Society, including aim of the day was to promote royal visitor was our Head of our Social Media Officer, Paige self-worth, self-respect and External Affairs, Stephen Canning Dawkins. Thank you to everyone empowerment through music, and our Public Affairs Manager, for your amazing support. song and a good deal of cake. Katie Frank.

Taking fundraising hours and raising more than £18,000 to support people with Pic uploaded to trello to new heights epilepsy. Many thanks to all the amazing If you would like to challenge dare devils who abseiled 540ft yourself by running, walking, down Broadgate Tower, one of cycling, swimming or trekking to London’s tallest buildings. This was raise money for Epilepsy Society, the second year that we have held have a look at all our fantastic the event, and our brilliant team opportunities at epilepsysociety. raised more than £25,000 for us. org.uk/fundraise-events There is A huge thanks too, to everyone something for everyone and our who took part in RideLondon 2019, fundraising team will give you our cycling 100 miles in under nine full support.

A sad farewell to Nik Powell It is with great sadness that we bring you news of the death of one of our vice presidents, Nik Powell. Nik has died at the age of 69. He was director of the National Film and School and a long-term friend and supporter of the charity. Epilepsy was a cause close to Nik's heart as he lived with the condition from the age of eight until his forties. In 2008 he ran the London Marathon for us, raising more than £25,000. Our thoughts are with his friends and family. He will be much missed.

Epilepsy Review issue 23, 2019 23 "Epilepsy can frighten the daylights out of me"

Helpline 01494 601 400 Monday and Tuesday 9am to 4pm, Wednesday 9am to 7.30pm. Confidential, national call rate. Information and emotional support.

Epilepsy Society Chesham Lane Chalfont St Peter Buckinghamshire Our Helpline is a lifeline for SL9 0RJ Enquiries 01494 601 300 Richard when he needs to Fundraising 01494 601 414 talk. We want to make sure the Helpline is open five days a week for Richard and others like him. epilepsysociety.org.uk

Please help us raise £125,000 to extend the /epilepsysociety service. Every gift donated, no matter how small, will be doubled by a generous donor.

Donation Matchfund Gift Aid £20 + £20 + £10 = £50

Please donate at: © Epilepsy Society | Registered charity number 206186 epilepsysociety.org.uk/helplineappeal