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Epilepsy Action ambassadors

Imogen Clark - Epilepsy Action ambassador

Epilepsy Action Ambassador Imogen ClarkImogen Clark has been making waves in the world of swimming, having produced a new British National Record in the women’s 50 metre breaststroke. Taking part in the winning 2018 European Aquatics Championships Imogen also won the silver medal in the 50 metre breaststroke.

It hasn’t all been plain sailing for Imogen. At the age of 13 Imogen had her first seizure, and a year later in 2014 she was diagnosed with photosensitive epilepsy. Her doctors advised that she would not be able to swim and her diagnosis could have been the end of her swimming career. Imogen, however, was determined that this would not be the case. Four years later and she has a silver medal and her new record time now sees her ranked fourth in the world and the ninth fastest performer ever in the event.

Imogen has now become an Epilepsy Action ambassador, and here she talks about how her diagnosis affected her, and how she was determined to just keep swimming.

Tell us about your first seizure. When were you first diagnosed with epilepsy? Did you know anyone before who had epilepsy?

My first seizure was in the swimming pool during early morning training in May 2014. At this time I had no diagnosis and the doctors dismissed it as a ‘teenage episode’. My second seizure was a year after the first one, but this time I had a cluster of them. The majority were in the pool at training or at home in the shower. During this time, I didn’t know of anyone else who had the condition.

How did it feel when you were first diagnosed – what kind of thoughts came across your mind?

I didn’t quite understand what it all meant. My main worries were if I would be able to carry on swimming and if I would ever be allowed to drive. I never really worried about my diagnosis because all I wanted to do was swim, and to win at swimming. So I just embraced the diagnosis because you can’t change the fact.

How has epilepsy affected you physically/emotionally and practically too?

Epilepsy hasn’t affected me physically, except at first when the doctors were trying to diagnose me. During this time they told me I couldn’t swim. Since then, practically the only change I have had to go through is wearing a different coloured swimming hat to the rest of the team so I stood out for the lifeguard.

I tell everyone about my condition, friends, family, team mates and coaches. This helps to keep me safe as I know in every situation somebody knows about my condition. That way it isn’t a complete shock and they therefore know how what to do if I have a seizure.

How did you feel when you were told you shouldn’t swim given swimming is a huge passion for you? What made you determined to keep pressing on?

When I got told I couldn’t swim I remember getting tearful. But I can also remember thinking that there was no way I was stopping because I loved it and my epilepsy was mild even at that stage. I found that getting told I couldn’t swim made me even more determined to swim. In the time I was told that I shouldn’t get in the pool (mainly because I was wired up to a little machine) I went to my local gym almost every day. Eventually when the doctors realised I was stable enough, I got straight back in the pool. My mum wasn’t happy about this. She was scared for my safety, but my dad agreed with me and I had the National Championships coming up in three weeks so I had to be race ready! I raced in the nationals despite having roughly two weeks out of the pool and I managed to make the final.

How have loved ones reacted to your diagnosis?

My loved ones responded quite badly at first, they wanted to protect me and kept me close by at all times. They made sure all my friends had their phone numbers so if anything happened they could contact someone in the family. I found this the most difficult part out of my whole diagnosis, not the part that affected me, but seeing how it affected my family. I didn’t want them to worry; I wanted them to live, so that’s what I did! As time passed everything came more relaxed. My mum, however, still finds it difficult to watch me train and she always checks that I am okay when in the shower.

Have there been any unexpected hurdles or positive things that have happened along the way?

When facing hurdles, I made sure procedures were put in place so I could continue to live the life I set out with my training and racing.

One hurdle happened recently when I competed at the European Championships which was my Great Britain debut. I won a medal and at the awards ceremony they make the arena pitch black and have twirling lights and 25 photographers with flashing cameras. This would have been a huge problem with my photosensitive epilepsy. I had to tell my team manager and the team doctor and they contacted the event managers so this could quickly get changed before I walked out for the ceremony. Everyone was very cooperative and had no problem turning the arena lights on and turning the photographers flash off.

Another hurdle faced at the start was I was allergic to my medication and ended up in a rash from head to toe. Once I got this changed I have been fine ever since. These hurdles have made my family, friends and team mates’ support system come closer together. They have never judged me or treated me different because of it, and they have stood by me every step of the way.

You’ve talked a lot about importance of mindset and keeping a positive attitude – can you tell us more about this? What’s your message to people with epilepsy?

I always listened to the doctors, do as they asked and told everyone around me about the condition. My main thing was I wouldn’t let a label of ‘having epilepsy’ stop me from doing anything and get in the way of achieving my dreams. I believe mind-set is everything and not just in the sporting world.

Everything I do I want to do it the best I can; such as exams, playing cards, when I use to work as a lifeguard. I just wanted to be the best because if I could do it when the odds are against me then everyone has the chance to do the same. My mindset is strong and I believe this is down to the people I surround myself with.

No one told me I couldn’t do anything. As a child I was ill with serve asthma and eczema. I still learnt how to swim and got my 25 metre badge at the age of 3 years old as my family never let anyone treat me differently or sympathise me. Nothing will ever stop me. My message to people with epilepsy is: epilepsy is our normal, we can’t change it so embrace it, epilepsy is a part of us but don’t let it define you! Tell yourself you have it until you’re comfortable with it because once you’re okay with the fact you can move on and work towards your own dreams. I understand some of you may have it worse than I do and it may impair you more than me, but it shouldn’t stop you from trying. Everyone is fearful but not everyone can convert their fear and change it into courage. Remember, failure is the first step towards success.

How did you first hear about Epilepsy Action and how has it helped you and your family?

From looking online for charities that were involved we found Epilepsy Action. We wanted to be part of a community to raise awareness. We purchased the purple bands for Purple Day and I brought a gym vest to raise further awareness at training.

Beth Dobbin - Epilepsy Action ambassador

Epilepsy Action Ambassador Jordan WylieBeth had her first seizure aged 13. She fell unconscious for 15 minutes and paramedics initially thought she had suffered a stroke, as she had lost all movement down her left side.

"I couldn't talk, I couldn't walk, I couldn't move the left side of my face. I couldn't recognise my parents and I had no memory."

Eleven years on, Beth is 200m sprinter. This summer, she smashed the 200m Scottish record four times and was crowned British champion. She represented Great Britain in the Athletics World Cup, and went on to race in the 200m final at the European Championships in Berlin

When were you first diagnosed with epilepsy? Did you know anyone before who had epilepsy?

I was diagnosed with epilepsy at 13, with no idea what it was really. I didn't fully know what a seizure was until I had one either, so this was a lot to get my head around. I didn't think I knew anyone who suffered with epilepsy. But after my diagnosis I found out that a family friend also had epilepsy that was controlled by medication.

How did it feel when you were first diagnosed – what kind of thoughts came across your mind?

When I was first diagnosed I remember feeling upset that I had to take medication every day. The doctors advised that I shouldn't go out on my own or take baths unsupervised. Looking back, that definitely isn't the end of the world but at the time it upset me. I also remember feeling that I didn't really understand what epilepsy was - so how was I going to explain it to others? I struggled to talk to anyone about it and it was a lot to deal with at a young age. I probably didn't deal with it very well at the time, which is why the PTSD developed later on.

How has epilepsy affected you physically/emotionally and practically too? How did loved ones react to your diagnosis?

Emotionally has been the toughest part. There is always that worry in the back of your mind that you're going to have a seizure, and for a lot of my life that has dictated the decisions I make. This has resulted in me suffering with anxiety, phobias and PTSD. I would develop phobias of things that I believed could trigger a seizure and have flashbacks frequently. I was in a constant state of anxiety. I do still avoid flashing lights, as I worry they could cause a seizure and it's not worth the risk. Physically, I still don't feel as quick on my left side, which was the side that was left paralysed after my first big seizure. Memory is also a big part. If I'm not doing something every day, I tend to forget how to do it. Similarly, things I've not thought about in a while tend to get erased from my memory and I can't always picture things. I never really discussed it with loved ones, I'm not too sure why. But my mum always came to appointments with me.

How do you feel you could have been helped more as a teenager?

I would like to have received mental health support when I was diagnosed to prevent the anxiety and PTSD that developed. I would have also like my diagnosis explained to me more to help me understand what epilepsy was, and any seizure triggers. Me and my mum were just given a leaflet and had to do all the research ourselves.

Did you run competitively before your diagnosis? Did epilepsy, or your medication, create any barriers to running? What made you determined to keep going

Before my diagnosis I ran competitively. After a large seizure left me unable to walk, I had to take a lot of time off athletics and started back slowly. From then on, my performances weren't very good. I believe this was down to my medication, as I was just so tired all the time. After a couple of months of coming off my medication I was performing so much better. I went from not being able to make teams at the English Schools Champs to winning a silver medal. I took chunks off my time. At the peak of my mental health problems, I was also down on my best time and had a poor season. In the end, I took had to take 3 months off because I was struggling so much. But I was motivated to keep going as I believe athletics helps me mentally and the mental side has been the biggest part of my epilepsy battle.

You’ve talked about developing PTSD and anxiety. Did they impact on your studies or your training? How have you coped with this?

I really started to struggle mentally in my late teens, which had a huge impact. At its peak, I had to leave lectures halfway through because I felt so anxious and was convinced I was having a seizure. My sprinting performances were also much slower, as I felt so unwell all the time.

Have there been any unexpected hurdles to overcome?

I'd say the PTSD was unexpected. Because I was having physical flashbacks, as well as mental. I was convinced that my limbs were moving uncontrollably when they weren't. It took a lot of doctors, all telling me the same thing, for me to finally accept it.

What positive things have happened along the way?

Becoming British 200m Champion despite all the adversity I have faced, has meant that it has all been worth it. I've also been able to inspire people with my story.

What’s your message to people with epilepsy?

Talk to people about how you are feeling about your epilepsy. Look for support around you, whether that's talking to people about how you're feeling or managing the physical symptoms as best you can. If you're not happy with something, speak to your doctors to see if there's anything you can do to change the aspects that are making you unhappy. It does get better! Live your life to the fullest because epilepsy doesn't have to stop you from achieving anything, if it can be managed in the right way.

How did you first hear about Epilepsy Action and how has it helped you and your family, if at all?

I first saw Epilepsy Action on Facebook and followed their page. It has been something I turn to whenever I'm worried about something, especially when I was suffering with mental health issues. It provided me with reassurance that things I thought could cause seizures wouldn't - and how best to live a healthy lifestyle to reduce the risk of seizures

Anything else you’d like to add?

I've gone from having no movement in the whole left side of my body to being the British 200m Champion.

Jordan Wylie - Epilepsy Action ambassador

Epilepsy Action Ambassador Jordan WylieA former soldier turned entrepreneur and author, Jordan Wylie has faced many challenges in his life. Having served in Afghanistan and Iraq, protected tankers from Somali pirates, Jordan is now running his own businesses and inspiring others through his motivational speaking.

From very modest beginnings in Lancashire, Jordan joined the army but after he was injured in Iraq he could no longer serve. Jordan was then offered the chance to work as part of a security team on a tanker in the Yemen. Seizing the opportunity, Jordan was soon working as a guard on vessels carrying aid into Mogadishu at the height of the Somali piracy crisis. It was during this period that the ship Jordan was protecting was hijacked by pirates, and he was called into action to save the crew. This led to Jordan writing his memoir, Citadel, about the incident.

Jordan was diagnosed with epilepsy in January 2018. Here he explains how he has handled that diagnosis, and why he has chosen to become an ambassador for Epilepsy Action.

When were you first diagnosed with epilepsy?

In January 2018, I had my first seizure in September 2017 in Monaco and my second in December 2017 back in the UK.

Did you have any family history of the condition or experience with loved ones?

I didn’t have any history at all of epilepsy in my family so it came as a bit of a shock, to be honest.

How did it feel when you were first diagnosed – what kind of thoughts came across your mind?

My first thoughts were based around the very active lifestyle I have. I do a lot of travel and adventures and many charity challenges - I was mainly concerned on how having epilepsy was going to impact this aspect of my life.

What challenges did you come across after your diagnosis?

I have embraced the whole diagnosis of epilepsy. I have tried to take it in my stride. I hope to show that many people with epilepsy can still do pretty much anything they want if you have the right attitude. When I found out I had epilepsy I was just about to head to Somalia for a charity project. I am running through three of the world’s most dangerous countries in 2018 (Somalia, Iraq and Afghanistan). The NHS doctors told me that I couldn’t go and they heavily advised against it. We got some private advice. Working with the medical professionals we came up with a plan of how we can manage a seizure in a remote and hostile environment in an emergency. We put several risk mitigation measures in place. Before I knew it, I was on a plane to Somalia where I completed the first ever official 10k in Hargeisa, Somaliland.

How have loved ones reacted to your diagnosis?

My family have probably been more concerned than I have, in all honesty. I try not to worry about things I cannot control as this causes us unnecessary problems and stress that we can do nothing about. A friend of mine Laura Deas recently returned as an Olympic medallist last month from the Winter Olympic Games. Laura gave me some advice a while back when I was struggling with my former relationship. She said "control the controllables" in life and don’t worry about everything else and you will live and much happier and more fulfilling life. This is something that has stuck with me and I really believe it’s true. My daughter was intrigued to learn more about epilepsy and how she could help me if I have a seizure. She really enjoyed learning about epilepsy. She even picked up a children’s book about it from the local library which kept her occupied for a few days.

You’ve talked a lot about the importance of mindset and keeping a positive attitude – can you tell us more about this? What’s your message to people with epilepsy?

I believe a positive attitude and mindset are important for everyone in this world, not just those with epilepsy. Positive thinking is very beneficial for our mental health. It can help eliminate paranoia and negative thoughts that can cause depression and stress. People with epilepsy have been known to worry about the effects it can have on their personal and professional life. When you start thinking with a positive mind your whole attitude changes. You’ll see your day-to-day environment in a new light. A positive mind also allows you to handle everyday situations far better. This includes all the ups and downs including those you may face from having epilepsy.

Have you used the Epilepsy Action Helpline or website for information?

The Epilepsy Action Helpline and the website are excellent free resources that provide informative guidance and advice on key concerns that people with epilepsy may have. Personally I found the section on first aid very useful. It is great for letting other people know (such as family, friends and work colleagues) on what they can do in the event of a seizure or epilepsy-related incident. Education is a vital aspect of managing epilepsy and the more you can learn about it. The more confident you are in dealing with any of the challenges they may arise in the future.

Is there anything else you’d like to add?

In 2018 I’ll be taking on some very challenging expeditions and challenges. I want to show anyone out there that for many people with epilepsy the condition will only become an obstacle if you allow it to be. I intend to fly the flag for people with epilepsy across the UK in 2018 and I’m honoured to be an ambassador for Epilepsy Action. If anyone wishes to talk one-to-one or has any concerns at all, please do not hesitate to get in touch.

@mrjordanwylie / enquiries@jordanwylie.org

Stacey McClean - Epilepsy Action ambassador

By her early teens, former S Club Juniors star Stacey McClean had already plenty of life experiences under her belt – from enjoying many Top 10 hits to playing packed-out arenas. But nothing could have prepared the Blackpool-born star for what was about to come next as she reached her twenties. In 2014, Stacey was devastated to learn her mum Leanne had been diagnosed with epilepsy. Here she explains exactly why it’s a cause so close to her heart and why she is so proud to be Epilepsy Action’s ambassador.

A lot to learn

“My mum’s epilepsy has opened up a whole new world I never knew existed. I find it quite shocking that 87 people are diagnosed every single day, and yet there is still so much misunderstanding about epilepsy. It’s an invisible condition which affects people’s lives in so many ways, from their home and work life to everyday social situations. I want to help people understand that epilepsy is nothing to be ashamed about, it’s a way of life that is just a bit different. If I can help other people understand more about epilepsy so people with the condition can live the life they deserve, I’ll be happy.

“Before my mum’s diagnosis, I probably knew next to nothing about epilepsy. Epilepsy Action does such a fantastic job in helping people with expert advice, information and support when they need it most. I have met some amazing people, heard amazing stories of bravery and I am still learning about the condition, in order to help spread the word and to work towards epilepsy being a condition everyone is aware of.”

Out of the blue

Stacey and her mum

Stacey’s mum had her first seizure at work in 2014 and was later diagnosed with epilepsy at the age of 45. Stacey said this has significantly impacted on her whole family. “Our lives changed forever when my mum was diagnosed with epilepsy. It came out of the blue – we had no warning or history of the condition in the family. My mum is a strong, independent person and for her to not know when a seizure is going to strike has been the hardest part. Having shared this journey with her and seeing everything she has been through, regardless of her seizures has inspired me to help others out there living with epilepsy, as well as change the perceptions and stigma attached to the condition.”

Saving lives

Stacey said she’ll never forget the first time she saw her mum have a seizure while shopping in the Boxing Day sales in her home-town of Blackpool. “Even after being told what to do if a person has a seizure, everything that my mum told me just completely left my head. Everyone was crowding round. Some people were trying to help but others were just hovering around, which made the situation worse. There was someone from St John Ambulance walking past us when it happened, so he was really helpful. But seeing someone you love, especially your mum, being in that state, was just awful. It still upsets me when I think about it.”

She continued: “It’s very likely you know or know of someone with epilepsy. For me, it only took a few moments to learn about how to react if my mum ever had a seizure with me and we were alone. This can potentially save a life and can also help your family member or friend to feel more at ease, instead of feeling like a burden.”

More than just seizures

Epilepsy Action chief executive Philip Lee said: “We are delighted to welcome Stacey McClean on board as our ambassador. She has experienced first-hand the devastating impact an epilepsy diagnosis can have on an individual’s life and that of their loved ones. Epilepsy is about so much more than just having seizures and it can affect anyone at any stage of their life. Stacey has spoken powerfully and passionately about her mum’s epilepsy story and we know she understands how important it is for more people to better understand this very complex condition.”

Event Date: 
Friday 17 February 2017 (All day)

Comments: read the 7 comments or add yours

Comments

Thankyou for raising awareness for us older ladies :-) you and your mum will be stronger together. Still at diagnosis stage myelf, but my teenager daughter to finds very upsetting as like you say once an indendance mum !!! Both take care

Submitted by Donna on

Wouldn't it have been more sensible to mention the Motion privacy programme before I had mentioned many things about how my epilepsy had affected the rest of my life for the last 46 of my 70urs !

Submitted by Chris Lesurf on

I am 68 years old and was diagnosed with "late onset" epilepsy 10 years ago. It came out of the blue and was a total nightmare to begin with; I even had a seizure on one occasion while crossing the road!! However, one of the most difficult things to deal with is how awkward others can feel at the very mention of the word "epilepsy"! I think they are frightened that they will have to deal with the person actually having a seizure and don't feel at all comfortable with that idea. Nowadays I make a point of telling people that I have epilepsy so that they will know what is happening if I do have a seizure while they are there. However, you can see an almost immediate reaction of fear and I do find myself feeling that I have to reassure them that that is unlikely to happen as my seizures are basically under control and then to watch them begin to relax again. It is really very helpful that people like Stacey, who are in the public eye, are willing to let people know that epilepsy is not some weird and wonderful illness that has to be hidden away and that its sufferers are completely normal people who want to live a normal life.

Submitted by Margaret Hay on

You have my admiration Stacey, its people like you that give all sufferers comfort and hope. Love your work.

Submitted by David Jackson on

Thank you for raising awareness. My daugherkins has had epilepsy since six years old. She is now thirty five. Her epilepsy is not controlled Evan though she has lots of Medstead to take and has the vagus nerve implant. She has had her nose broken , numerous lumps and bumps on her face due to seizures and also a skin graph on her leg due to a third degree iron burn. She works,and is one of the bravest girls I know. But worse than this is her feelings of isolation and depressive mood swings. The seizures are only a part of the problem. People think once the seizures are over everything is OK. Sadly this is not the case. The fear and wishing life was different continues. Thank you for helping.

Submitted by Mary on

What an inspirational story Jordan. A positive attitude is fundamental to life, let alone with epilepsy. I was diagnosed at 18, before going to University. I trained as an Engineer and have lived in Japan. More recently i trained in arboriculture, climbing and felling trees. Anything is possible, go for it.

Submitted by Andrew South on

Great story Jordan. I am little disappointed at how dismissive you appear to be of the impact Epilepsy has on people’s lives, which is obviously based on your own experience. Perhaps you should talk to people who have more severe forms of Epilepsy and then reappraise how easy it is to achieve things. Your story describes two seizures in 3 months. My son has 8 seizures every single day. He achieves amazing things considering the impact his seizures and medication has on him. So, yes, it is an obstacle and he has no choice on the impact it has on what he can achieve.

Submitted by Matt Wood on

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