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Epilepsy Action ambassadors

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 - 09:13

Comments: read the 5 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

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