SUDEP
We are educating you about SUDEP (Sudden Unexpected Death in Epilepsy) because we respect you, believe that education is empowering, and want you to be able to minimise your risk.
SUDEP is the term used when a person with epilepsy dies without warning and when there’s no clear reason why they have died.
How we look at minimising our risk of SUDEP
Analogy: When we teach a child how to cross the road, we warn them that crossing the road is a risk and that they could get run over by a vehicle, but that there are simple ways for them to minimise their risk. We teach them to stop at the curb, to look both ways, to listen, and then to assess all of the information they’ve gathered before they cross the road. This is the way that we look at SUDEP: we take simple measures to minimise our risk.
Listen to the Epilepsy Sparks Insights podcast or view the video interview episode with SUDEP Action about SUDEP & minimising risk!
Epilepsy Sparks Insights - SUDEP Action - Saving & Bettering Lives
Torie Robinson interviews SUDEP Action for SUDEP Action Day 2020
See SUDEP Action’s website for loads of brilliantly useful information for you/your loved one/friend: sudep.org/leaflets-and-downloadable-information
SUDEP affects about 500-600 people per year in the UK, which is about 1 in 1000 people with epilepsy. BUT, many of these lives can be saved if people take simple steps to minimise their risks.
For some people their risk of SUDEP is higher than for others:
“My risk of SUDEP used to be pretty high. I remember my neurologist telling me this - which I really appreciated because it got me taking my epilepsy more seriously! I was really lucky to have such a cool, honest, caring and respectful neurologist! I was also very lucky to be suitable for and to have temporal lobe resection surgery as treatment for my epilepsy. Now, my risk of SUDEP is relatively low as I now have far fewer seizures, but I do still have a level of risk and I minimise this by:
Taking my Anti-Epileptic Drugs;
Getting enough sleep, and;
Taking steps to help manage my anxiety”
- Torie Robinson, CEO Epilepsy Sparks
What increases a persons’ risk of SUDEP?
Having active seizures puts a person at risk of SUDEP, and there are certain types of seizure which research has shown increase a person’s risk level further, those being:
Tonic-clonic seizures;
Nocturnal seizures (seizures which happen during sleep), and;
Cluster convulsive seizures and status epilepticus
See here for more information: sudep.org/seizures-risk-ii
While epilepsy risks can be worrying to think about – there are often positive steps you can take to reduce risks, and the clinician who helps you manage your epilepsy can also help you with this.
SUDEP is something that many neurologists and epilepsy nurses don’t feel comfortable talking about with people with epilepsy, but any family member who has lost someone they love to SUDEP will tell you that they wished they’d known about it so they could have helped minimise their loved ones’ risk.
Research has shown epilepsy risks, including those linked to SUDEP can change over time. So SUDEP Action created the EpSMon app to help you keep track of any changes to your epilepsy & risk - so you know when to reach out for extra help, or may need to take steps to reduce risks if you can. Check it out!!!
Download the EpSMon app now for free:
For further information regarding SUDEP, please visit SUDEP Action or if you have been bereaved by an epilepsy-related death, please contact them on:
01235 772852 or email support@sudep.org.
Take part in this cool research!
For people with epilepsy:
Take part in the SUDEP Action “Epilepsy Risks and COVID-19 - Survey for people with epilepsy” here:
oxford.onlinesurveys.ac.uk/epilepsy-and-risk-during-the-covid-19-pandemic-people-wit-3
For health professionals:
Take part in the SUDEP Action “Epilepsy Risks and COVID-19 - Survey for health professionals” here:
oxford.onlinesurveys.ac.uk/epilepsy-and-risk-during-the-covid-19-pandemic-health-car-2
See here Jane Hanna, OBE, CEO of SUDEP Action, Dr Arjune Sen, Associate Professor, Epileptologist, and our CEO Torie Robinson talk about SUDEP.
See Dr Rohit Shankar, MBE, Neuropsychiatrist talk to Torie Robinson about minimising one’s risk of SUDEP.