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SUDEP: Donna remembers her brother Ian


Donna & Ian

Epilepsy Research UK supporters

Date Published: October 12, 2022

Author: James Matejka

Donna’s brother Ian was a long-standing Epilepsy Research UK supporter, taking part in countless fundraising events and raising a huge amount for research. Tragically, Ian died in January of 2022 after suffering a seizure. In today’s Research Blog, Donna talks about Ian’s life and why she feels the risks associated with SUDEP must be discussed with more people affected by epilepsy.

We didn’t know it at the time, but the first signs of my brother’s epilepsy happened when he was an altar boy at our local parish church. Ian had what we thought were episodes of fainting, but we now know they were absence seizures.

Ian had many tonic-clonic seizures throughout his life and there was never a time when he was stable long enough to be able to learn to drive. Over the years his medication was increased considerably, which made him tired but he continued to work a full-time job throughout it all. He never let his seizures stop him enjoying life, from going to the local pub with his friends and cousins to playing badminton and going to concerts. We clearly remember one game of badminton between him and his cousin when Ian had a seizure mid strike – when he finally came round after the seizure his first words were: “I did win didn’t I?”. Ian was very competitive.

Ian took part in our local ‘Boxing Day Dip’ every year and also completed the Great North Run numerous times, with all funds raised donated to Epilepsy Research UK. His work colleagues told the family that when they collected for birthdays Ian would say “there is nothing I need for myself – please just donate to Epilepsy Research UK”. He was always selfless and, though his consultant could not get his seizures under control, continued to raise awareness of epilepsy throughout his life.

The last five years of Ian’s life were difficult for us all, as his seizures got more frequent and more violent. Some days he could have five seizures, one after the other, which resulted in some terrible injuries. He dislocated his shoulders numerous times but surgery wasn’t an option until his seizures stopped and he was stable, so he would just carry on and put up with the pain.×316-1.webp

It was so important for Ian that others could be helped by research, even if he couldn’t be.

On the 1st January 2022, Ian’s partner told us he had had two violent seizures. He worked at home on this day until 5pm and then went to bed and slept. We have been told the seizure that took his life was in fact nowhere near as severe as they usually are. He had been due to attend an appointment with his consultant the following Friday as they had put him on the waiting list for VNS surgery. Unfortunately, it was too late for Ian, but we all know he would want us to carry on raising awareness in his name.

Ian’s partner decided against flowers at his funeral so we asked for donations, raising approximately £350 in his memory. We are in the process of organising an event for Purple Day on 26th March, and for what would have been Ian’s 50th birthday – 28th July 2022. Both occasions will be held in his memory, to raise money and awareness for epilepsy. It was so important for Ian that others could be helped by research, even if he couldn’t be.

My daughter was diagnosed with epilepsy at eight years old after having two seizures. She has been up and down with trying to get the correct medication and was diagnosed with NEAD (non-epileptic attack disorder) at age 14 so had a few tough years with these and epileptic seizures. Now 21 years old, she has been stable for three years and has been able to get her driving licence. Since my brother’s passing, I have become very anxious about her health – the threat of SUDEP is constantly on our minds.

Our mam is 87 years old and was terribly affected by Ian’s passing. She has since become another voice in raising awareness and hopes to help others in the same position Ian was in. As a family, we felt Ian could have been given more support for and information about his condition – he was never even told about SUDEP. When a patient is as unstable as Ian was, we think SUDEP precautions must be discussed. If they were, Ian could have taken steps to reduce the risks, and he may still be here today.

– Donna, March 2022