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of everyone affected by epilepsy

Stacey's Story

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