What do you know about epilepsy? If you are like me not very much

I remember being 16 years old and going on a school visit to the local residential school for children with epilepsy. I remember being a little bit perturbed by the condition but then 36 years elapsed my life was never touched by epilepsy it wasn’t something I needed to know about.

There are so many parallels with pancreatic cancer you think don’t need to know if it doesn’t affect you. But awareness is a good thing, especially when you realise that there are 600,000 people in the UK with epilepsy. 1 in a 103 people are diagnosed with epilepsy and every week 21 people die with epilepsy.

Lesley 1980 visiting the epilepsy residential school

Article from the school magazine

It was 2006 and it was Seth’s mum Patricia’s 70th birthday a time to celebrate the traditional three score years and ten. Its one of the rare occasions when the family is all together and the house is alive with sound of laughter, nephews and nieces running around playing, and having fun. Our youngest nephew Archie aged 5 is happy with his older cousins, revelling in the horseplay and loving the attention. He is happy, fun loving little boy with an infectious laugh, a wide grin and he’s just that little bit cheeky.

Roll on the clock 10 years and Archie is a smiley, sensitive, affectionate young man he is interested in technology and is the go-to person about computers and phones. He has a girlfriend, loves to make things, he likes to make films and has a promising future stretching out in front of him.

In 2016 he is diagnosed with epilepsy, he has three visits to the hospital where they are working out the treatment plan but advised against medication given his age, his upcoming exams and the fact that no one had seen him in a seizure. Everyone is reassured that more investigations would help develop a plan and that the condition could be managed.

I thought about epilepsy for the first time since 1980 and memories of that visit to the epilepsy residential school, but soon the thought was gone. Then  epilepsy tore through my life in August 2016 like an unforgiving tornado, a storm of devastation and with heart wrenching consequences.

Archie was dead.

He had died during the night as a result of a seizure. He had died as a SUDEP. A Sudden Unexpected Death from EPilepsy.

Age 15 the lovely, bright, funny, affectionate young man was dead……..nephew Archie was dead.

Archie lived in the Netherlands and that’s where he had been treated for his newly diagnosed epilepsy but there had been no medication prescribed, no shared decision making with the family about the finding the best treatment options, no suggestion that a special anti-suffocation pillow might make a difference, no suggestion that an electronic monitor might help.

There was nothing and now Archie was dead.

This was in 2016 and three years later with the permission of Archie’s mum Hesma I want to share this story to raise awareness of SUDEP on SUDEP Action Day 23rd October.

You might ask what is SUDEP?
Sudden unexpected death in epilepsy (SUDEP) is a fatal complication of epilepsy. It is defined as the sudden and unexpected, non-traumatic and non-drowning death of a person with epilepsy, without a toxicological or anatomical cause of death detected during the post-mortem examination

How many die from SUDEP?
SUDEP occurs in approximately 1 per 1000 people with epilepsy (1 in 4,500 children)

There is lots of information on the SUDEP Action website and the link below takes you to some of the devices and monitors that might be used to monitor epilepsy. https://sudep.org/epilepsy-safety-devices. There is also a clinical safety checklist to guide healthcare professionals https://sudep.org/checklist

Please share and make people aware especially healthcare professionals, you might save a life.

So today I am supporting SUDEP Action Day in memory of my nephew Archie whose life was ended by a condition that is eminently manageable. His promise for the future was extinguished in 2016 at the time when he was reaching the brink of manhood, a time when he should have been embracing life and living it to the full. I can’t tell you how very sad writing this makes me, but I want to share it so that there is just a little bit more awareness out there.

I am asking you if you could support and share this story so that we do #Something4Archie to acknowledge the death of a lovely kind young man who had such potential to contribute to the world.

On SUDEP Action Day join me in #RememberingArchie by sharing his heart-breaking story.

Archie

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