Epilepsy Action ambassadors

Our new ambassador Zac is a visually impaired sprinter for Great Britain with epilepsy.

How did it feel when you were first diagnosed – how did you cope with the news?

I’d never heard of epilepsy before I was diagnosed aged 11. I was obviously upset, I didn’t really understand what it was. Having to go through all the testing at a young age was quite tough. My mum used to tell me that there is always somebody worse off, so that taught me not to feel sorry for myself, to get on with the cards I was dealt.

How did your family and friends react to your diagnosis?

At the time, my friends didn’t really understand, which was understandable at that age. My mum was upset; she probably took the news harder than anyone, even me. But whenever I had an appointment, she used to take me shopping afterwards to make it a fun day out.

Do you feel you could have been helped more as a child – especially starting secondary school and in your teens?

Yes, 1000%. It was the toughest 2 years of my life. At the same time, I was diagnosed with a degenerative eye condition called Stargardt’s Disease. It took all my confidence. Because of this I didn’t go to any lessons in year 7. I had one-to-one sessions in the “special unit”. It was difficult going into year 8 because I had no friends. It was like I’d hit the reset button and had to start again. If I could go back in time, I wish I’d had some sort of counselling or psychological help. School was a huge journey because I started at the lowest point, but finished year 11 as a prefect. I learned a lot from it.

Did you run competitively before your diagnosis? Did epilepsy, or your medication, create any barriers to running?

No. When I was 14, my teacher told me to try Paralympic sport. I didn’t realise being visually impaired was classed as a disability, I always saw disabled athletes in wheelchairs or as amputees. So, it took me a while to accept what I had was actually a disability. I only started training when I was 18 and made my GB debut at 20. It doesn’t sound like a long time but the amount I trained in that 2 years felt like a lifetime! I’m on Keppra for my epilepsy. Sometimes I find it difficult as the side effects can make me very tired. This, alongside full-time training is an obstacle sometimes. My friends often joke that I’m first to bed every night and without an alarm I’d probably be the last one to wake up! I guess like all medications you just adapt and get used to it.

What (or who) has championed you and kept you positive and determined?

I’m lucky I come from a very hardworking family with 5 older brothers. Working hard has always come as a standard. I have a vision in my head and that is what keeps me going. I want to be the best and I’ve always wanted to turn the disability I have into a positive thing. I never had anyone with my conditions to look up to, to show me “this is possible” – so if I can be that for just one person, it will make it all worth it.

Are your seizures under control at the moment? How do you manage tiredness and not overdoing it, especially when you’re an athlete?

I’m very fortunate my seizures are under control. Every now and then I get a weird side effect, like a funny taste or smell, but fortunately it doesn’t affect me. I’m very lucky I have a good team around me who can help keep my body healthy. My coach Leon Baptiste is a former Commonwealth 200m champion, so he knows the physical and mental demands of an athlete. If I’m ever tired or fatigued, he’ll notice it before I do. Just like all aspects in life, if you trust in what you’re doing, and if you have a good relationship with your coach, or in any working scenario, it will make everything a much easier, more successful experience.

Have there been any unexpected hurdles to overcome?

Last year I had the worst season of my life, I ran so slow all year. I should’ve won gold at the Europeans and I didn’t even make the final. Mentally, it was so difficult to keep belief in myself. It’s easy to talk about it now, because this year has been the best season I’ve ever had. But last year and early this year it was so hard to keep my mental strength.

What positive things have happened along the way? What’s next for you?

I’ve been to 2 World Championships, 2 European Championships, and a Commonwealth Games so far, some of the most incredible experiences. I picked up a European gold in the relay too! My next big aim is Tokyo Paralympics in 2020, so I’m working hard for that.

You co-hosted our Epilepsy, My Family and Me event earlier this year at Loughborough University, with fellow athlete Beth Dobbin. How was that?

I was honoured to be invited along to help host the day. All the kids were really enthusiastic and willing to get involved. It was great to do it with Beth, as we’re good friends and she’s an incredible athlete and role model herself. Events like that are so important because they can introduce new hobbies and friends to the kids. It shows them the power of sport.

What’s your message to young people who have just been diagnosed with epilepsy? Where is a good place for them to seek help?

Keep positive and remember what you can do, rather than what you can’t do. Talk to your friends and family. The more they understand, the easier it will be.

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

I was just looking through social media for epilepsy support networks, and I came across Epilepsy Action. When I discovered the charity, I was grown up and had already come to terms with my epilepsy, but for sure if I’d found it when I was younger it would have been very helpful!

Beth 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.

Imogen 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.