Dianne and Emma

Epilepsy and SUDEP – Dianne’s story

Our Fundraising Manager, Gemma Fleet, talked to Dianne whose daughter Emma sadly passed away due to Sudden Unexplained Death In Epilepsy (SUDEP) in April 2023.

Dianne shares her memories of Emma. Her life living with epilepsy and how she would like Emma to be remembered.

We would like to thank Dianne for raising awareness, and everyone at Epilepsy Scotland passes on our condolences to Dianne and her family.

To listen to the interview, please click here. Please be aware that some people may find the interview upsetting.


Emma’s story

In 2017, Emma wrote the below on her Facebook page describing her experiences of living with epilepsy.

“I have had epilepsy since I was a child and have had many different types of seizures throughout my life.

On Friday, I started a new job and as I was going through training on the shop floor, I had my first full-blown seizure since I was a child.

I have been left with bruises and scars all over my face and body. Aching from head to toe, but that is not what I am writing to talk about.

I’m writing to talk about the stigma around epilepsy. It’s not always someone falling to the ground and jerking. Someone can be staring into space and have a moment of confusion or de-ja-vu.

In today’s society, people are too quick to judge and say “They aren’t doing their job properly as it looks like they are being lazy.” “Are not capable of doing a job because of an illness that can not be cured.” Or “They are being rude as it looks as if they aren’t paying attention to what is being said.”

All I am going to say is people need to understand all of the different issues that go on behind the scenes with someone with epilepsy before they can sit and judge us for our capabilities.

Epilepsy can cause someone to be completely knocked out for days, just to be able to rebuild their energy back up, and can cause so much stress and anxiety for the person.

Personally, I have felt so much anxiety having to go outside with the looks of judgment as I walk down the street with a black eye, etc, people wondering and speculating what has happened to me.

I am quite lucky that I had a large group of people around me to help me, including my new manager who had complete understanding, and even some of the customers who stopped to help.

Can’t thank the ambulance service enough for making sure I was okay with the amount of blood lost from cuts over my body.

I’m so grateful for everyone who’s been there for me over the past couple of days to help me feel better!”

For more information about SUDEP, please go to www.sudep.org

If you have lost a loved one to SUDEP and need to talk to someone, please call our freephone Helpline on 0808 800 2200 or email contact@epilepsyscotland.org.uk