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of everyone affected by epilepsy

Karen Newman-Brown

after reading one of the stories I was surprised to find out that their story actually mapped mine!

I was diagnosed with Epilepsy in 2013 and it came out of the blue, no warning, no family history of the condition in my family. I was 46 at the time. I was at work when it happened and all I know is when I came around in A&E totally confused. One of my bosses were there along with a colleague and good friend.

At first they thought it was a Heart Attack and possibly a tumour. Following this I was referred to a neurologist and had a number of tests to identify what was actually happening. The seizures continued and unfortunately I never had any warning. it happened at work numerous times, at home and whilst I was asleep. finally it was confirmed in the October of that year - you have Tonic Clonic Epilepsy.

This turned my world upside down and the only way I knew it happened was when colleagues and family told me. I just saw the aftermath and the 'witness' statements. I am not going to deny this - I was terrified, my family were scared and confused and my partner was in shock. To this day my youngest, Jack, does not talk about it as it is too upsetting for him and my daughter Emma, my partner Kevin felt totally helpless. I lost my independence. Not able to have my new grandson on my own just in case I had a seizure. I had to return my licence, rely on friends and family to 'babysit' me. Sorry, that's just how I feel and see it.

I never knew about this condition until it happened to me and then I researched it. It helped because we have a Brain Centre where I work and they research all cognitive conditions, I was able to talk to them about it. it is rare to happen to someone at that time of life.

After a year or so I started to 'accept' it to a degree, to this day I struggle with it. however, they are now stabilised due to medication - I have to take 7 different tablets a day to keep it under control.

I now organise events at my work place, work closely with Epilepsy Action, Birmingham Childrens Hospital, a member of Epilepsy Society as I mentioned earlier and I am on a forum/blog where I can talk to people globally about the condition as they relate. It does help me sometimes and to offer advice to others is comforting, we all share our own stories.

People NEED to understand the condition and avoid treating us like we are 'strange' or say things like 'they are just drunk or on drugs to make them act like that'. it is an invisible condition and just because you cannot see it does not mean that its not a serious problem.

I feel I have lost years of my life which I will never get back - memory loss is probably the worst for me.

Karen Newman-Brown
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