London Marathon, 26.2 long miles.....what was I thinking? I was thinking about my best friend Erika who sadly left us at the very young age of 24. Cause of death: Sudden Unexplained Death in Epilepsy (SUDEP).

I still remember when she was diagnosed, we had just entered our teens and the world was ours to conquer. Epilepsy? It couldn't be that bad, could it? The tricky thing with Epilepsy is that there is no test that can prove that you have it - an epilepsy specialist can only make a diagnosis based mainly on your symptoms.

In the beginning it wasn't that bad, she had a few occasional seizures and had to get used to all the medication but we were young and wild and free, as we were supposed to be! We were living our life and making the most out of it. It's only epilepsy, it can't be that bad right? Erika being Erika didn't let anything get in her way and carried on with life as normal, moving out from her parents and becoming an adult! But just to be on the safe side, IF she has an epileptic seizure this is what you need to do Maria. Sure, no worries, not like it's going to happen - but it did and it's one of the worst experiences I have ever had!! You know what's going on but at the same time you don't and you can't do anything to help apart from timing it to see if you will need to call an ambulance. Erika laughed it off and told me I was a cry baby and silly to worry, it was just a normal fit. So it wasn't so serious then or was it?

As time went by the seizures became regular and the medication didn't work as well as everyone hoped. But Erika stayed positive as only she could and carried on with life as a "normal" young adult, except life wasn't normal but she refused to let the epilepsy affect her. Together with the love of her life Json - a New Foundland - she worked hard for independence and they were preparing for their exam where Json would pass as an assistance dog, the first one to detect when a seizure was coming so he could warn her to lay down. An exam that was one week away when she passed away. He was so unique that they were part of a research study to try and understand how he could tell when she was about to have a seizure.

The indepence that Erika worked so hard for she gradually lost over time. On bad days she had several seizures a day and it was no longer safe for her to be the free bird she so desperately wanted to be. We agreed that if she could stay seizure free for a week - just one week - she would come and visit me in London, but a week without seizures was far too much to ask for.

On 26 January 2008 Erika lost her fight against epilepsy in a sudden unexpected death in epilepsy during a seizure.

Now in comparison, 26.2 miles doesn't seem so bad!

Running in memory of Erika, knowing the pain and suffering that she went through with a big smile on her face until the end will keep me going and get me to that finish line!

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Around 75 people are diagnosed with epilepsy every day. I've seen the impact that Epilepsy can have on someone's life and if we want to do something about it we must work hard! So please donate what you can and contribute towards research that could make a seizure-free life a reality for all those with epilepsy. And remember, every little helps!!

Epilepsy Society lead the way in cutting edge medical research and are committed to better understanding epilepsy, improving diagnosis and treatment and making seizure-free life a reality for all those with epilepsy. They also provide specialist residential care for those whose epilepsy is so severe and complex that they require round the clock support, as well as offering expert support to those who want to live more independently.

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Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

 

THANK YOU

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PS: I hope you never ever have to, but if you do ever see someone having an epileptic seizure please follow these simple steps:

1. Stay calm.
2. Look around - is the person in a dangerous place? If not, don't move them. Move objects like furniture away from them.
3. Note the time the seizure starts.
4. Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
5. Cushion their head with something soft if they have collapsed to the ground.
6. Don't hold them down.
7. Don't put anything in their mouth.
8. Check the time again, If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance.
9. After the seizure has stopped, put them into the Recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance. 10. Stay with them until they are fully recovered.
If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.