Blogs
Blogs from our previous SUDEP Action Day Campaigns
There are many incredible individuals that contribute to SUDEP Action Day every year.
Here we share some of the blogs that our amazing supporters have written to raise awareness of SUDEP Action Day to help save lives.
Get involved in this year’s event. Whether you are someone with epilepsy, a campaigner, bereaved, a health professional or part of an organisation – there are plenty of ways you can be part of this global event.
SUDEP Action Day 2022
Why I’m supporting SUDEP Action Day: By Lord Vaizey
As a proud president of SUDEP Action I’m delighted that the charity is holding an event in Parliament on SUDEP Action Day, October 19.
I certainly plan to attend the event at Portcullis House, and I will be urging my colleagues from all sides of the political spectrum, from within the House of Commons and the House of Lords, to be there too. I know the objective is to get an adjournment debate in Parliament on tackling epilepsy deaths, as well as forge better links with Ministers and policymakers.
SUDEP Action is a wonderful organisation who do important and varied work; not just in bereavement counselling but also in pioneering research, including their work with the Epilepsy Deaths Register. I believe they have the tools and solutions to help the Government tackle epilepsy deaths.
It’s still shocking to reflect that there are at least 21 epilepsy-related deaths a week and that many of these could be avoided. Back in 2015, whilst I was MP for Wantage – where SUDEP Action is based – I supported the charity’s Stay Smart campaign, designed to raise awareness around a new safety app supporting people with epilepsy. The technology developed by SUDEP Action, known as EpSMon, was designed to help people with epilepsy assess their risks between doctors’ visits.
This app has helped thousands of people living with epilepsy to stay safe, putting some control back in their hands. It enables people to better understand their personal epilepsy risks so they can make informed decisions about when to book GP appointments and review care plans. SUDEP Action can be rightly proud of the work it has done in developing this important and easy to use tool, along with the SUDEP & Seizure Safety Checklist, a tool for clinicians supported by leading epilepsy experts.
During my time as President of SUDEP Action I’ve listened to many heart-breaking stories from families who have lost loved ones – often young and in good health, apart from their epilepsy – to SUDEP. I know that this year, some families will be bravely sharing their personal stories publicly for SUDEP Action Day 2022,which has the theme #TalkSudepNow.
It’s hard to comprehend what it must be like to lose someone close to you so suddenly, so unexpectedly and so young. SUDEP Action works hard to support bereaved families who have gone through such shocking losses. However, they also work tirelessly to stop such terrible experiences from happening to others in the future.
I hope you’ll show your support for SUDEP Action Day 2022 and the network of supporters who make up this special SUDEP Action community.
SUDEP Action Day 2021
A letter between brothers for SUDEP Action Day
SUDEP Action supporter and filmmaker Fraser Morton on brotherhood and epilepsy education for families
It’s true what they say, that the ones we lose never leave you. My older brother Blair has watched over me as my silent passenger for longer than he was alive. He died at age 19 from a condition known as Sudden Unexpected Death in Epilepsy (SUDEP) and in the two decades since his passing, I have learnt much about loss, while being humbled by its lasting legacy over my own life. While I have long forgotten the physical feeling of what it is to be a brother, that in no way diminishes or finishes my relationship with him. I carry him everywhere all the time. Sometimes he’s a lead weight and sometimes he’s a life raft. Sometimes he’s annoying but oftentimes he’s there to remind me of the finite nature of this life. He is a reflection and daily reminder of my own mortality and my relationship with the afterlife. In many ways, you could say he is my ghost, but I prefer to think of him as my silent passenger. He’s always there looking out past me, finding things in strangers’ eyes or meaning in places I visit, and kicking my insides to remind me he’s there. Brothers don’t let go. Until we both do.
I read someplace that every time you think of someone you’ve lost that you lose them all over again. Well, if you believe that then the opposite must also be true. And so I like to think that every time I think of my brother, I bring him back to life.
For mum, dad and me, we cannot change our past, only live as three and long for our fourth family member. We live with Blair’s memory each in our own way. My way is to write.
A few years ago, my brother inspired me to create a documentary project called A Life Electric, a visual and written exploration of epilepsy experiences worldwide. The COVID19 pandemic put a hold on our film production plans, but I want to assure everyone who has supported the project so far, that this project will continue and will be published, screened and finished.
SUDEP Action, a charity that does essential work to promote awareness, preventative measures and counselling for bereaved families, asked me to write today. I have been close to the charity for a few years now and have come to learn much about the challenges they face to educate about risks of SUDEP within the medical industry, so that families can be informed and mitigate risks for their children and family members with epilepsy. SUDEP Action’s work is essential.
My family — and hundreds of others — were not aware of the risks of SUDEP. Families need to be made aware by their doctors so that they can take necessary risk management with regards to SUDEP for their children. Radical advances are being made with technology to help alert family members to potential warning signs of SUDEP and there is a wealth of information on risk management to prevent potential cases from occurring. Families need access to this information and education by their doctor. It’s that simple.
Withholding this information can be devastating for families. In the United Kingdom alone, 21 people a week die to SUDEP. Saving a life can be as simple as a few words. I fully support the mission of SUDEP Action and their #Time2Change campaign.
Sincerely
Fraser Morton
Anything you can do to talk around that topic, share your/others experiences of this, to encourage people reading to learn about & speak to their clinicians about SUDEP/Risk would be wonderful ????You’ll find other bits about the theme, and our key ‘asks’ for people who want to get involved here: www.sudepactionday.org
If you want to learn more about the A Life Electric project or follow Fraser’s writing, details are below.
View A Life Electric free online resource here.
Learn more about the project here
Follow the A Life Electric project: Instagram, Facebook, Twitter and newsletter.
SUDEP Action is a wonderful charity and I fully support the work of all the team. If you have lost someone through epilepsy, I would encourage you to reach out to them.
Best wishes
Fraser Morton
Director/Producer/Journalist
Far Features
Message from our CEO, Jane
I am looking forward at being alongside this year for SUDEP Action Day, 20th October.
For this year’s SUDEP Action Day I’ve been working alongside the team to get out vital messages to MPs and others and am planning my 5k My Way walk on the Saturday before the 20th. So looking forward to seeing all the different ways that people choose to get involved.
For me a walk along a beautiful river in the rain and the mud but ending up with a rainbow felt very cathartic as we worked as a charity though all the challenges of 2020.
2020 was all about COVID but we managed with your support to rise above and not only be alongside families and clinicians but to research and bring the impact of the pandemic on families and health workers to the attention of government.
This year I plan to walk 5 k along the RidgeWay of the Vale of White Horse, to travel along an ancient trackway described as Britain’s oldest road with magnificent views down to the communities that lie in the Vale. It will be a great opportunity to think about the future in the midst of all the bad news that surrounds us every day and how together we can continue to play our part to improve lives.
2021 is different – now that COVID is no longer dominating the news and there are more opportunities opening up. The pandemic has just shown up the systemic inequalities that existed for decades about access to services and proper recognition and management of SUDEP risk but also about inequalities in treatment after death. We have really good evidence now through the pandemic that when SUDEP Action can bring our knowledge to bear we can make deaths be reported properly, get vital learnings and bring innovation and change.
This is in tribute to all those who have died from epilepsy, and it tells the world that these people will have not died in vain, because in their memory, we bring these life saving messages, to the whole community, so that people can live well.
On this SUDEP Action Day, you can join us, our theme is #TimeforChange
People can do that in all sorts of ways. Most of the SUDEP Action team are taking part in the My Way to 5K event that week, to raise awareness in their community. Sharing messages about SUDEP awareness.
Other people are writing letters to MPs.
Other people are sharing social media messaging.
Whatever it is, all that is important, is that we are doing this together, that we are on the same path.
And we are doing this because we care about people with epilepsy.
Last year, we had 100 organisations and thousands of people take part in SUDEP Action Day.
So please have a look at the SUDEP Action Day website for this year.
We look forward to hearing about all the different ways that you get involved.
For now, from all the SUDEP Action team, take care and stay safe.
CEO, SUDEP Action
SUDEP Action Day 2020
A message from our CEO; Jane Hanna OBE for SUDEP Action Day 2020
Full transcript below
I am looking forward at being alongside this year for SUDEP Action Day, 23 October.
SUDEP Action Day is more important than ever before. It’s taking place in a time of global crisis, and it serves to shine a light on what we can all do, to help play our part, to help save lives, during the pandemic.
SUDEP accounts for the largest part of epilepsy deaths, and is perhaps the less well known, and that is why SUDEP Action Day is so important. Some people in some places, still do not know that SUDEP exists. A lot of people still don’t know what their personal risks are, and what they can do themselves to help address those personal risks, and how they can access help to support them with vital interventions that can help them with their own situation, helping their personal centred risks.
There is no one solution for SUDEP, other than knowledge can save lives. Personalised centred knowledge about SUDEP, can help save lives now.
So we hope that you will join us, for SUDEP Action Day, in this most difficult of years, so that we can be together – to connect and share this day with hundreds of organisations and people around the world, so that we can get these vital messages out together.
This is in tribute to all those who have died from epilepsy, and it tells the world that these people will have not died in vain, because in their memory, we bring these life saving messages, to the whole community, so that people can live well.
On this SUDEP Action Day, you can join us, our theme is #SpeakUp2SaveLives
People can do that in all sorts of ways. Most of the SUDEP Action team are taking part in the My Way to 5K event that week, to raise awareness in their community. Sharing messages about SUDEP awareness.
Other people are writing letters to MPs.
Other people are sharing social media messaging.
Whatever it is, all that is important, is that we are doing this together, that we are on the same path.
And we are doing this because we care about people with epilepsy.
Last year, we had 100 organisations and thousands of people take part in SUDEP Action Day.
So please have a look at the SUDEP Action Day website for this year.
We look forward to hearing about all the different ways that you get involved.
For now, from all the SUDEP Action team, take care and stay safe.
Jane Hanna OBE
CEO, SUDEP Action
Shattering Silence Through Action: #SpeakUp2SaveLives
A note from the A Life Electric project
By Fraser Morton
Pushing past the headlines of the pandemic is no easy task at this stage of 2020 — especially for already maligned health conditions.
Epilepsy, and the sometimes-tragic result of Sudden Unexpected Death in Epilepsy (SUDEP), needs charities like SUDEP Action UK to continue their essential work and for their message to reach wider audiences and the general public.
The pandemic is diverting healthcare attention and budgets, but we cannot let the bad news of COVID-19 drown out the voices of communities who are already underrepresented in society.
During the pandemic, I have continued to interview families and healthcare professionals in the epilepsy communities in different parts of the world, and have heard a range of issues, from access to medication and in-person check-ups, scans, results, while also hearing of cancelled community events and mental health issues due to isolating effects of the pandemic.
While the world has gone to work online, so has the epilepsy community and the vital support networks, services and charities. This has had cascading effects.
I know that SUDEP Action — despite their continued commitment — has faced challenges, too, and have been affected by furlough and working from home constraints.
I have been awed by their resolve and unflinching commitment to campaigning and supporting the epilepsy community and families recently bereaved by SUDEP.
The new-normal socially-distanced work environment is why online campaigns such as #SpeakUp2SaveLives is so crucial to continue to show communities — who are spending exorbitant amounts of time online — that amid the noise of the pandemic, the epilepsy community is still represented.
SUDEP Action and the wider epilepsy community needs their message to continue to be heard by governments at local, national and international levels so that the thousands of families affected by SUDEP each year are represented.
At a grassroots level, SUDEP Action engages policy-makers and puts pressure on those in power to develop educational and healthcare preventatives to mitigate SUDEP occurring.
The charity’s work focuses on saving lives and also giving support to bereaved families. Every day they work to #SpeakUp2SaveLives.
I am happy to support SUDEP Action and #SpeakUp2SaveLives. They are a wonderful charity staffed by exceptional people who have built a network of families internationally, who I also have come to know and am a part of.
Good luck all, better times will come again.
Fraser Morton
October 23, 2020
A Life Electric project
SUDEP Action Day 2020: #SpeakUp2SaveLives by Faye (author of Epilepsy, Pregnancy, Motherhood & Me)
I love this theme for this year’s SUDEP Action Day. I have been thinking about it for a few weeks whilst thinking about putting pen to paper, but what surprised me was it made me think up little ways in which I could speak up. It isn’t always the big things that make a difference, my own example was seeing a friends Instagram video that was a bit “flashy” , my friend was ace, put a trigger warning at the start of the video, and told me how it helped her and would maybe prompt others. That small stone casts a ripple.
2020 has been a strange year for everyone, I have seen the end of my own seizure free streak, after two years, I was devastated. It reminded me of how important it is to talk, many people in my life now, were not around when my seizures were uncontrolled, they have only ever known me as I am now. Yes, I have epilepsy, but it had been controlled and no concern, last week reminded me of just how dangerous that was. Yes, it was controlled, but as we all know, Epilepsy is cruel and does not think twice about when to strike. The people around me now, who didn’t know me back then, have had to watch as my body and muscles struggled to recover, as I became a shell of myself, as I needed daily naps. Why oh why had I not had these conversations before?
It also made me think of a day recently when at work, days after my seizure. Someone asked ‘what I had done’ after spotting the bruising on my arm.
“I tripped on decorating stuff.” I mumbled.
Instantly ashamed of myself.
Why did I lie?
I have epilepsy but I am capable. This was a chance to speak up, to educate someone who may have no knowledge of the condition. I was livid with myself; it wasn’t like it would have been an issue at work. The day after my seizure I returned to work and my boss could not have been more supportive. I have always championed being honest and educating where you can, and I failed.
It doesn’t have to be in big ways, it doesn’t have to be blog posts.
But in two conversations, in a week in my own life, I had both lost a chance to #SpeakUpToSaveLives and also educate someone on something so simple for them, but could make the world of difference to someone living with epilepsy. I realised that attending meetings, being an activist was for nothing if I was not willing to #SpeakUpToSaveLives in my day to day life.
The pandemic has highlighted huge inequalities and we know that SUDEP, epilepsy risks and epilepsy deaths are one of the neglected areas, made worse by COVID-19. Thousands of people with epilepsy, their carers and health workers have report through SUDEP Action’s international research project that:
- epilepsy risks have worsened, (as shown in my own life, my first seizure in two years)
- people with epilepsy are having more trouble accessing the care and services they need
- health professionals are worried their patients are not seeking help if they’re epilepsy is getting worse
- and bereaved families say pain they have lived with for decades has been made worse during 2020.
You may think the innocent and nothingy conversation you have about your own epilepsy won’t make a difference, but every single bit of information we share, every experience will help to #SpeakUpToSaveLives. As the saying goes: “I alone can’t change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa.
I vowed to never bend the truth about my journey again, to be honest about the highs and the lows. I had always been so honest, but this last week I was ashamed and embarrassed, but today I #ToSpeakUpToSaveLives.
Let your epilepsy journey and story be the stone.
SUDEP Action Day 2020 – My Way To 5K reflection blog from our CEO
It was lovely to join with over seventy other supporters to walk My Way To 5K for SUDEP Action Day 2020 as part of a week when we united with hundreds of organisations and many thousands of people all about #SpeakUp2SaveLives!
The My Way To 5K Walk was a wonderful moment after a busy week to connect again with so many friends and supporters of the cause who make all the work possible.
I chose a walk by a river with my daughter Kyra and our dog Woody. The river closest to us is the River Thames. I was brought up in the mountains and close to the sea so am drawn to torrents and waterfalls, but I love the strength and majesty of the River Thames as it makes its way surely and certainly to connect with our Parliament and to meet the Sea.
Kyra is learning maps so we measured the 5-k distance on the map with a piece of string and a ruler which was just as well as Kyra’s step counter didn’t convert to kilometres!
In some ways a River walk was not the best choice. It was muddy to start with and as we reached half-way it started to rain hard for the next 2.5 km. It made me think a little of the SUDEP cause!
The SUDEP cause has never been easy, but it is one that all in our community can take pride in. In the UK we have safety solutions and have created partnerships already in practice that need to be rapidly accelerated to give people the knowledge and the pester power to access what they need to reduce their personal risks. No amount of mud will stop progress.
We took shelter under a magnificent railway bridge. We can feel strength too from knowing that not only do we walk the walk to tackle deaths, but it is a walk on the solid ground of evidence alongside thousands of families who all have their own truth.
Like the bridge, we too have years of experience in overcoming physical distance and developing strong connections. When we sat down with Lucy Bidgood who developed the awareness walk alongside SUDEP Action Day, it only took a minute or two to come up with a plan about how we could overcome pandemic challenges and the My Way To 5K became a reality!
It was a beautiful journey – the leaves in greens, yellows and browns and the river full as we walked alongside. We were rewarded in the end by a wonderful rainbow just over the river. It also made me think of the SUDEP journey!
As Faye and Fraser shared their impactful blogs last week about raising awareness, I was reminded along the Thames that every “small stone casts a ripple”. I began my journey on my own and met four wonderful women. SUDEP Action today is thousands of people and there are hundreds of organisations that help whether that is a sharing of a tweet on SUDEP Action Day or relationships that have developed to an enduring partnership to save lives. One thing is certain – the pandemic like all the other barriers we have faced will not stop our river of change!
After an exceptionally demanding six months since the Covid pandemic reached the UK, it was wonderful indeed to take time to reflect. It is such an honour to walk alongside all the supporters of our cause during these times who are quite simply our heart and our engine room. My wonderful team at SUDEP Action, who make SUDEP Action Day and all our work possible, are tireless because of this.
Shortly we will be launching `Lives Cut Short’ which is our research on why Government and others need to listen now to the worrying predictions we made in May, and the alerts we sent them about epilepsy, risk and deaths. All of us are ripples in the water. Please get in touch though ….if you are happy to lend your story to us by contacting [email protected] and help us cut through to all those that need to be listening so we can save lives now.
SUDEP Action Day 2019
Last year we asked you to take #5forEpilepsySafety encouraging people to take small positive steps towards reducing epilepsy risks.
SUDEP Action Day 2019 by Faye (author of Epilepsy, Pregnancy, Motherhood & Me)
#5forepilepsysafety
This year the message for SUDEP Action Day is a simple one. Take 5. Whether that be five minutes to educate yourself about SUDEP, five minutes to share information online, five minutes to contact your MP, or 5 minutes to make the decision to fundraise, campaign or raise awareness. It’s not much to ask at all when you realise that by taking five you may just save someone’s life.
Here is my input to #5forepilepsysafety. I am writing this blog and will ensure I share at least five posts on social media for SUDEP Action Day, hopefully educating and spreading a little awareness. On a personal note I am going to sit down and look at my own epilepsy and work out if there is room for improvement in my care. It is so easy when you have lived with epilepsy for a long time to forget to take stock of it all (especially when it is fairly well controlled) Am I getting enough sleep? Can I reduce my stress levels in any way? This campaign is not only about sharing awareness but also about looking inwards and ensuring you are doing everything you can to minimise your own risk of SUDEP.
When I saw the campaign this year it really got me thinking and I decided that I was going to do two things. As I said the first was awareness related. I was going to write this post and I am going to share lots of facts etc on social media. The other was a bit more personal, it made me sit and think. So often lately I share stuff in the blog and work on awareness, but I don’t always look at my own journey with epilepsy anymore.
One of the things SUDEP Action try and highlight all year round is to look at your own risk factors because seizure control is the biggest way to reduce your risk of SUDEP. It really hit home with me, maybe because of Noah? Maybe because of the fact I realised life is short. So today I am about being honest with you all and making sure you do the same with yourself.
Am I getting enough sleep? No.
Am I exercising as often as I could be? Again no (exercise has always helped me personally control my epilepsy).
Have I forgotten to take my meds? Yes. As a busy Mum I am so often running about after others that I will be honest and say there have been days I have forgotten.
As a teenager have you been out with mates/out for a drink and forgotten when you got home to take medication? We have all been there, but it’s important we don’t make a habit of it.
Have I had more alcohol on evenings than I think is sensible with my epilepsy? Yes.
So, for me, what started as a project to help SUDEP Action Day has actually turned in to me really looking at my own health. I appreciate this list doesn’t make me sound like the best role model for anyone with epilepsy but its about being honest and about real life, and that sometimes we all slip up, or don’t always take the best care of ourselves.
So what have I done about it?
I have set alarms to make sure I take medication, and rather than turning them off and carrying on with what I am doing I am making sure that I stop and do it when that alarm sounds. I have gotten back into swimming on a weekly basis, ensuring that I am physically healthy. It also means I sleep well as I am tired from swimming. Sleep deprivation has always been a big trigger for me, so this is so important. I am trying to get to bed at a decent time or making an effort to nap when I can if I am tired. I am not saying it is always possible but if I at least try then it’s better than no attempt at all. I am now making sure that if I know I am going out I try and take my medication before I go where possible, so I don’t forget late in the evening, and I am limiting my alcohol intake.
It took this campaign by SUDEP Action to make me think of myself and identify my seizure triggers and therefore what were my risk factors. I also did something I haven’t done for a very long time and discussed my medication with my epilepsy nurse. It ended in the agreement that we were not going to change anything, but it was good to sit and discuss options and why I was on the best combination for me right now. I also did something that I am terrible at doing and took on board some advice he gave me.
My own life is very stressful at the moment and he knows me well enough to know it means I go looking for an outlet, normally by doing something a bit crazy (like a marathon or 100KM trek) and he advised me very gently to not throw myself into anything new for a while and for once I have listened 🙂 I am currently 19 months seizure free and if I can help it I’d like it to stay that way.
WHAT IS SUDEP?
SUDEP is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found.
SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.
Epilepsy, like other long-term conditions such as Asthma or Diabetes comes with certain risks. If left unchecked these can become very serious and can cause some people to die prematurely; so knowing about them, and understanding how to reduce them where you can, is important. Unfortunately, a number of people with epilepsy do die each year. 21 people with epilepsy die each week in the UK alone (over 1000 per year), but this number is likely underestimated. Up to 50% of these deaths are due to Sudden Unexpected Death in Epilepsy (SUDEP).
But what can you do? SUDEP Action have kindly provided some ideas of how you can get involved.
TALK
Get online, share information, share the key messages and posters. Use the hashtags #5forepilepsysafety and #SudepACtionDay2019, can we get it trending this year?
LEARN
- Take a look at the https://sudepactionday.org/. It is full of useful information and advice: understanding your condition is a powerful step to reducing risk.
- Talk to your neurologists, doctors, or nurses about SUDEP and any steps you can take to reduce your risk.
- Share the information with others, educate them about SUDEP.
CHECK YOUR RISKS
This was a big one for me, and one I think all of us with epilepsy should do on a regular basis.
But what can you do?
- Use a seizure diary to help you keep an eye on your epilepsy: even if you are seizure free or your seizures are controlled, it can still help!
- Make sure you have a yearly epilepsy review with your health professional to check for any changes
- Check out the EpSMon app to help you keep an eye on your risks & how they may be changing (knowing about your risks means you can do something quickly if things change)
- Check out any national epilepsy guidelines for information to help you know the care to expect
CAMPAIGN
Help SUDEP Action smash the stigma by talking openly and honestly about your epilepsy:
- Tell those around you how they can support you day-to-day or help during a seizure, find our seizure first aid poster here
- Write to your local MP – can they help you & SUDEP Action raise awareness?
- Share the #5forEpilepsySafety campaign images and downloads – could you create a display somewhere?
- Ask your local GP surgery, epilepsy clinic or epilepsy group to display leaflets on SUDEP and epilepsy risks
FUNDRAISE
Would you be able to take #5forEpilepsySafety and organise or be part of a fundraiser this year on SUDEP Action Day?
- Get those running shoes on and take part in a sponsored race
- Not afraid of heights? Why not take part in a sponsored bungee jump!
- Prefer to find inspiration from GBBO? Get your bake on and hold a bake sale to raise funds
For me I am not in a position to take part in an event at the moment, but I have made the decision that the next five times I am out and go to buy a coffee I am going to match that amount and donate it to SUDEP Action. It is all part of #5forepilepsysafety. Again, such a small thing but one if a few people do it will make a real difference.
I am so grateful for this year’s campaign because it has made me stop and reflect on my own health, and if everyone else does the same we will be well on our way to reducing the risks and hopefully reducing the number of deaths from SUDEP. If you have been affected by anything you have read or would like some more information or support please visit https://sudep.org/ or get in touch with the amazing SUDEP Action who will be more than happy to help.
Epilepsy Documentary; A Life Electric: ‘Let’s Earth The Conversation In Society’
A Life Electric is a multimedia documentary project created by Fraser Morton in memorandum of his brother Blair, who died from Sudden Unexpected Death In Epilepsy (SUDEP). Here, he shares the latest project updates with SUDEP Action…
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Dear SUDEP Action supporters and network,
I want you to know work is ongoing behind the scenes on the A Life Electric project, which explores epilepsy from a global perspective through the lens of personal experiences. SUDEP is one aspect of epilepsy discussed in the project. Since last we spoke, I’ve continued to gather as many perspectives from the epilepsy community through interviews in person in the UK and Hungary, along with my partner and photographer, Eszter, as well as holding Skype calls to gather more stories internationally. Next, our project takes us to Nepal to document stories and viewpoints there. Meanwhile, A Life Electric the film is also still in development and our team is working behind the scenes to secure funding for production. If you would like to learn more about our film, there are more details here.
I would like to share something briefly SUDEP Action CEO Jane Hanna OBE said during a recent visit this summer to the SUDEP Action HQ.
“The challenge is to connect all the research and good practice with policy makers on the ground – if I was to use an electric metaphor – It’s like lightning that has not properly earthed yet. People are dying in silence in a society where if you happen to have a condition like epilepsy that is about the head – it tends to get ignored. It’s simply not good enough. We need action to inform the public about the risks of SUDEP. We need to inform people without scaring them. They need to know all the information so they can make informed decisions about their choices.”
If you would like to read more about SUDEP in our project, please see Page 42 here.
A Life Electric Project Milestones
- February 11, 2019 – Launch of online educational documentary platform A Life Electric
- February 11, 2019 – Media coverage in the Scotsman, Napier Alumni & International Bureau for Epilepsy & SUDEP Action
- May 2019 – Selection for Breaking Through the Lens programme at 2019 International Cannes Film Festival
- July 2019 – Selected as one of 5 Of The Year’s Best Longreads by ReadyMag
- 2019-2020 Film development ongoing, photo exhibitions planned and book launch
Like all independent documentary projects, we do need some support to make our project and get more epilepsy stories out into the world. We have a dedicated team of filmmakers, creatives, and friends who have come onboard so far to help this project become a reality, which I am hugely grateful for. We are working hard to get this project made and get these epilepsy experiences to a wider community.
If you want to support in any way, or follow our progress, please do visit us here, sign up and follow our social media channels for the project: Instagram, Facebook, Twitter and newsletter.
You can view Part 1 of the project: Experimental documentary magazine here, or learn more about the project here and more about the film here.
SUDEP Action is a wonderful charity and I fully support the work of all the team. If you have lost someone through epilepsy, I would encourage you to reach out to them.
Best wishes
Fraser Morton
Director/Producer/Journalist
Far Features
SUDEP Action Day 2018
For SUDEP Action Day 2018 we wanted you to #ACT by Asking questions, Communicating and Taking positive action.
A portrait of SUDEP
A Life Electric Documentary Update
Journalist Fraser Morton, who joined the SUDEP Action National Conference in July this year in Leamington Spa, has been in touch with some updates on his documentary project about epilepsy.
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Hello to all,
As some of you know I have been developing a documentary project on epilepsy this year, called A Life Electric.
The project is inspired by my brother Blair, who we lost to SUDEP on May 15, 1998.
A Life Electric comprises film, photography and writing components.
The film development is ongoing, and I have managed to find some powerful stories from around the world – from Bangladesh, India, USA, Australia, Zimbabwe, Mali and Mongolia – and a wide range of of issues with regards to epilepsy that this project seeks to shed light on.
I spend a lot of time travelling and have uncovered stories of huge disparity between care for epilepsy in the first world and developing countries.
You would be amazed and shocked to hear some of the issues that are roadblocks in some countries today, and many issues still relating to spirituality in developing countries.
Our project will tell these stories issues relating to epilepsy in 2018.
The film has already gained international interest and an established London-based documentary producer/director has came onboard to make this project a reality.
We have lots to do to get the project off the ground, but are committed to making it happen and getting epilepsy the media coverage it deserves. We are applying for UK film funds, and are also in the process of seeking funding elsewhere, as well as finding people to film with around the world over the next year who we feel have a very important story to tell. If you would like to be involved in any way please do let us know and drop a message to [email protected]
I come to this project with a frustration about the lack of art, film and photography projects dedicated to the subject. We also feel that there are thousands of untold stories about men, women and children who defy their epilepsy each day worldwide with acts of incredible strength, courage and zeal for life that deserve to be heard and seen.
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A Portrait Of SUDEP
I think of all the framed photographs in our homes.
And I can’t help but think of the unlived years.
Where once there was life, now there is silence.
I think of this as I write with a photograph of my brother Blair next to me.
I look into his eyes and see nothing but a faded, pale outline of the brother that I used to know.
He’s not there anymore in that image, stuck on laminated card in 1997.
He’s long gone. I think about that sometimes when I look at a photograph of him, if a soul leaves a photograph after we die.
I often feel like he’s imprinted on my insides like a double exposure photograph.
I couldn’t escape it even if I wanted to.
I carry images of him, his life, his meaning and I can conjure them up at a moment’s notice.
And sometimes they come to my thoughts unasked and unexpected.
I wonder if that happens for you, too.
If a slideshow of images starts playing in your imagination behind your eyes.
If you find yourself staring into space or lost for a moment in a crowd of people, off away with your thoughts.
I wonder if you see them in other people as I do.
Have you ever seen them walking on a street, to be convinced its them. To chase after them, only to stare into the startled eyes of a stranger, slightly scared at being called another name.
I wonder if you might experience similar tricks on your mind.
And I wonder if you look for their qualities in other people.
Maybe you find a brother’s bond in friends.
Sometimes a laugh, or look, a walk, will remind me of my brother. And I see it as those serendipitous moments that give meaning to me and my past.
I can only wonder if the same happens to you.
I can tell you that the importance of brothers runs through me as strong as ever.
Despite forgetting the feeling of having a brother of blood by my side. I do look for it in others and it brings me strong friendships.
I think about those of us who have lost our family to this mysterious illness. And oftentimes children.
We are left with only the fading photographs.
And I write this because I believe that when you look at those photographs, if there is any scrap of guilt, shame or blame in you, then it needs to come out.
It needs to be left in the past.
Our shoulders are not wide enough to carry guilt with us. It’s not your fault and never was.
And two lives cannot be squandered.
So I think the only option is to persevere. However you can.
I believe in that telling each other our story, we learn an insight to each other’s path. Where we all walk under the same storm, in the wake of destruction that has entered our lives.
I believe that we cannot focus on all the unlived years.
We must now find meaning in their lives by being better to ourselves.
And we might be able to look at their photographs and find meaning to live fully, rather than be shackled by sadness.
SUDEP (Sudden Unexpected Death in Epilepsy) is one of them things, no one wants to think about it, no one wants to believe it happens and nobody believes it will happen to someone they love, that is why this years campaign from SUDEP Action is so very important.
Awareness isn’t enough its time to ACT!
I struggle every year with what to write, so much so its Tuesday morning and I’m still working on this. I always want to do the topic justice, I always want to make sure I get the message across clearly. There is no pretty way to write about SUDEP and this isn’t about scare mongering, it’s making sure as many people as possible have heard of SUDEP, they know the risks and know how to try and manage those risks. Its about saving lives.
I always want to do my part of SUDEP Action, and for SUDEP Action Day as I think it is a vitally important message that needs to be delivered. One family I spoke to in the run up to today told me their daughter had only ever had three seizures in her lifetime yet she sadly passed away from SUDEP. It got me thinking about my own epilepsy journey and where my own knowledge of SUDEP fitted within that.
I was diagnosed with epilepsy at the age of 7, I was 25 years old before I had first heard of SUDEP, I was 28 years old, expecting my first child having lived with epilepsy for 21 years before a medical professional ever uttered the word SUDEP to me. HOW is that happening? If I, someone who has lived with epilepsy all this time didn’t know about SUDEP until I was in my mid 20s, how are we supposed to get the message out to the world?
As I said above, I was 25 the first time I heard of SUDEP; it was via a facebook epilepsy support group back in early 2012, before that I had never heard the term. I guess much the same as some people I thought my seizures were not as bad as others and it wasn’t something I should think about, I mean no doctor had ever mentioned it to me so why should I have been worried? Having lived with epilepsy for 18 years before I had heard of SUDEP, was I naive to believe that my epilepsy couldn’t kill me? I clearly was and I worry that there are many others who are in the position I was.
Fast forward to 2015, I was 28 and pregnant with Noah and the word SUDEP was first uttered to me by a doctor. Now it wasn’t just my life it was my babies life too. I’m slightly ashamed to say that in the years in between first hearing the word and then it being mentioned to me by a doctor that although I read up a little I still lived in a naive, perhaps ignorant, bubble. However in the three years since Noah was born I have spoken to lots of families as well as SUDEP Action and done my research and I know that awareness isn’t enough, it is time to ACT. Its time to look after ourselves and look out for each other, so if you do one thing today share the message of SUDEP Action Day 2018.
So what can you do? ACT!
ASK
What are the risks?
- If you are and adult and have epilepsy, your risk is 1 in 1000.
- If you are a child with epilepsy, your risk is 1 in 4500.
- If you have 3 or more generalised tonic-clonic seizures in a year, you have an increased risk, particularly if they happen during sleep
- If you are being considered for epilepsy surgery, you are considered to be at increased risk
- If you have a drug or alcohol problem, your risk is higher than someone who doesn’t have these problems
- If you have had a recent epilepsy-related injury or are being treated for depression, you are at increased risk
- If you have absence or myoclonic seizures, you are not known to be at increased risk
- If you have very few seizures, you are at a lower risk, but still at risk
How can I reduce my risks?
Taking your medication regularly and reliably.
Speak to your doctor before making any changes to your medication.
Discuss any lifestyle changes such as having a baby or going to university with your doctor.
Avoid excess alcohol consumption and using recreational drugs
Make sure you have regular reviews.
Tell your doctor if your seizures have changed.
Not everyone with epilepsy is at risk, it is important you discuss your risk with your health professionals.
If your medication isn’t working, don’t settle for continued seizures. Ask your doctor what other options there might be. The risk of SUDEP varies from person to person.
Why dont more people know about SUDEP?
Act today and share some information about SUDEP, your one post could make all the difference.
Communicate
Share your experiences….
Share stories of how you manage your epilepsy, hopefully inspiring others and offering them a coping mechanism they may not have thought of before. Is sport the answer for you? Regular sleep?
Talk…..
To your doctors, to your friends, to your family. Explain the risks to those around you and ask your doctors what alternative there is if your seizures are not controlled.
Take Action
Share social media posts,
Retweet information.
Have regular reviews with your medical teams.
Knowledge saves lives.
There are over 1000 deaths a year because of epilepsy and over half of these are related to SUDEP, that number is also likely to be underestimated due to not all deaths being recorded as such. 52% of those with epilepsy are seizure free and it is believed 70% could be with the right medication, controlled seizures reduce your risk, so act now and speak to your medical teams, ask what else could be done. Look after yourself, listen to your body and today share the message.
I have spoke about myself being naive and living in a bubble believing it wouldn’t happen to me or somebody that I know, it has also been, for me, the saddest part of the stories of SUDEP I have heard, families having NO idea that epilepsy could kill. So ACT today, knowledge is power and you may just help save a life
SUDEP is a silent killer, it’s time to make a noise about it.
For information, advice & support visit: https://sudep.org/
Dedcicated to the memory of those lost to SUDEP x