The Seizure That Stole a Future campaign aims to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP). It highlights the profound impact SUDEP has on individuals with epilepsy and the families who have lost loved ones to this often little-known risk. Over 80,000 people in Scotland have epilepsy¹. An estimated two people per week die from SUDEP².
Epilepsy Scotland’s helpline is open for anyone wishing to seek support about these or any other epilepsy-related issues. Call 0808 800 2200.
About SUDEP
SUDEP—Sudden Unexpected Death in Epilepsy—is when a person with epilepsy dies suddenly and unexpectedly, with no clear cause of death found. Though relatively unknown, SUDEP is estimated to be responsible for around two epilepsy-related deaths each week in Scotland—nearly 100 lives every year.
Despite its impact, many people living with epilepsy and their families are unaware of SUDEP. This is often because the condition is not always discussed at diagnosis, a time when people may already feel overwhelmed. However, understanding the risks can help people make informed decisions and take practical steps to reduce them.
SUDEP appears to occur most often during or shortly after a seizure, especially at night. People who have generalised tonic-clonic seizures, experience seizures in sleep, or live alone may be more vulnerable. Although SUDEP cannot always be prevented, risk can sometimes be lowered through consistent use of prescribed medication, good seizure management, seizure alarms, and avoiding sleeping alone where possible.
Lesslie Young OBE, Chief Executive of Epilepsy Scotland, outlines what is currently known about SUDEP, who may be at risk, and why it’s important to raise awareness. With the right support and information, some risks can be reduced—and more lives protected.
¹Public Health Scotland General practice – disease prevalence data visualisation Revision 3 December 2024
²Mohanraj R, Norrie J, Stephen LJ, Kelly K, Hitiris N, Brodie MJ. Mortality in adults with newly diagnosed and chronic epilepsy: a retrospective comparative study. Lancet Neurol. 2006;5(6):481–7. doi:10.1016/S1474-4422(06)70448-3
My son dreamt of flying...
A seizure stole his future.
Matthew was Kerry’s firstborn – the eldest of eight. Bright, gentle, and endlessly curious, he was the kind of child who took things apart just to understand how they worked. He looked out for his younger siblings, helped with homework, and had big dreams of flying heavy transport planes with the RAF.
At 18, he had his whole future ahead of him. Then, after prom, he had a seizure. It was dismissed as overexcitement. But a few weeks later, another seizure came – this time serious enough to land him in hospital. That’s when he was diagnosed with epilepsy.
Matthew struggled to cope. The RAF dream was gone. He found it hard to see a future, and depression took hold. He stopped taking his medication regularly. His seizures became more frequent.
In time, he tried university, moved back home, found a job – and slowly, bits of the old Matthew returned. But one Mother’s Day morning, Kerry found him gone. He had died during the night. No warning. No explanation.
Kerry had never heard of SUDEP – Sudden Unexpected Death in Epilepsy. No one had told her. Now, she shares Matthew’s story to raise awareness, in the hope that no other family is left asking, “Why didn’t we know?”
My daughter dreamt of singing...
A seizure stole her future.
When Samantha was diagnosed with epilepsy at 16, it marked the beginning of a life lived with quiet strength. Her seizures came in clusters—if she had one, she would often have two or three. On the day she died, she had two seizures at work. Her dad picked her up, and they waited for the third. It never came. That evening, Sammie had been in bed texting a friend prior to passing. It was SUDEP—Sudden Unexpected Death in Epilepsy.
SUDEP had been mentioned at her first neurology appointment, but like many families, Janette and Samantha didn’t think it would happen to them. At one point, someone reassured Janette, “At least epilepsy isn’t fatal.” But it can be—and for Samantha, it was.
Samantha—known as Sammie—was warm, talented and quietly determined. She busked on Buchanan Street at 17, playing her guitar and singing songs filled with emotion. She was the kind of person who looked out for others without ever making a fuss.
Now, Janette continues to speak about Samantha’s life and the impact of her loss—not just to remember her daughter, but to raise awareness. Because no family should face SUDEP without knowing it exists.
Living with the risk of SUDEP
Ross had his first seizure in 1997—the same night Princess Diana died. He doesn’t remember it. He just remembers waking up in hospital with his family around him. That night marked the start of a life changed by epilepsy.
All of Ross’s seizures happen while he sleeps. At first, he thought that made him one of the lucky ones—less risk in daily life, fewer limitations. He continued working as a police officer, raised two children, and built a good life.
But there were things no one told him. Like the risk of SUDEP—Sudden Unexpected Death in Epilepsy. A risk that increases when seizures happen during sleep. A risk Ross didn’t learn about until years later, through Epilepsy Scotland.
Since 1997, Ross hasn’t slept alone. Every night comes with the same quiet fear: will I wake up?
Ross, his family, and doctors have learned to manage the condition as best as he can—taking his medication, recognising triggers, and putting plans in place with his family. He still has seizures, but he’s less scared than he was. Still cautious. Still concerned.
Ross shares his story to raise awareness—not just for himself, but for everyone living with epilepsy.
