Ian never let his seizures stop him from enjoying life – going to the local pub with friends and family, playing badminton, and watching concerts.
But in his last five years, Ian’s seizures got more frequent and more violent, often leading to injuries including dislocated shoulders. Then, in early January 2022, Ian had two violent seizures while he was working from home and sadly, died in his sleep later that day.
Like many people with epilepsy, Ian lived well despite his condition, but deaths like his are far too common. Over 20 people with epilepsy have their lives cut short every week. In about half of cases, the cause of death is unclear, and so they are called Sudden Unexpected Death in Epilepsy – SUDEP.
Ian’s sister Donna believes that the whole family could have been told more about the risks of SUDEP. If precautions had been discussed, she thinks Ian might still be here today.
However, by definition, we don’t understand what causes SUDEP – and so we don’t yet know how to prevent it. We don’t know why some seizures prove to be fatal while others don’t, nor why some people can survive hundreds of seizures like the one that ultimately ends their life. We don’t know how to predict someone’s risk, or why some groups of people are more at risk of SUDEP than others.
But we do know that research is the only way to find the answers. That’s why, thanks to your donations, Epilepsy Research UK has invested more than £1 million into research to prevent epilepsy-related deaths.
Dr Rob Wykes is just one of the scientists we’re funding to identify the causes of SUDEP. Rob is studying patterns of brain activity which temporarily ‘switch off’ certain areas of the brain after some seizures and which he thinks could lead to SUDEP. On the Research Blog later this month, Rob will explain more about this work, and how it could help develop treatments to prevent deaths.
Dr Michalis Kassinopoulos has been studying how the parts of the brain that control breathing and the heartbeat interact during sleep – when SUDEP most often occurs. In his Epilepsy Research UK-funded work, he is studying MRI scans and EEG recordings that have already been collected from many people across the world, some of whom have since died from SUDEP. Later this month, Michalis explains on the Research Blog how this huge dataset could help find ways to identify people at risk of SUDEP, and hopefully reduce epilepsy-related deaths.
During his life, Ian was dedicated to raising awareness of epilepsy and raising funds for Epilepsy Research UK. He ran the Great North Run several times for the charity, and when it was his birthday, he always asked work colleagues for donations instead of presents. Donna and the rest of Ian’s family continue these efforts in his memory: “We all know he would want us to carry on raising awareness in his name.”
On the Research Blog next week, Donna will tell the story of her brother’s death, but also of his life and what made him unique.
Donna knows that Ian would have wanted the money raised to go to research, which might one day prevent more people’s lives being cut short and stop other families from losing someone special. “It was so important for Ian that others could be helped by research, even if he couldn’t be.”
SUDEP Action Day 2022 is on Wednesday 19th October, and Epilepsy Research UK will be marking the day by sharing the stories of people who have lost loved ones to SUDEP.
If you’ve been affected by SUDEP or anything you’ve read here, the charity SUDEP Action have a support team you can speak to, as well as support groups and counselling services. Find out more at sudep.org .
