SUDEP Action Day :Be empowered to ask difficult questions

Today, Wednesday 21 October, is SUDEP Action Day and the theme for this year is sparking open conversations around seizure safety and risk management.

We are very grateful to Louise, who kindly recorded this video to remember her eldest daughter Hannah, who sadly died from SUDEP in December 2024.

Louise’s eldest daughter Hannah died from SUDEP in December 2024 at the age of 27. She was diagnosed with Juvenile Myclonic Epilepsy when she was twelve years old. Hannah had drug resistant epilepsy and tried numerous medications. It was a balancing act between getting some kind of control and Hannah being able to function. She had absence and tonic clonic seizures. At their worst she had almost 200 absence seizures a day and a tonic clonic every four or five days. She spent a lot of time medicated in hospital but Hannah always tried to live her best life. A talented musician, Hannah organised a fundraising concert and abseiled down the Broadgate Tower. She spoke openly about living with epilepsy. 

Behind every statistic is a family who have lost a loved one. And that’s more important that all the stats and figures. For me, that will always be my Hannah, my darling girl. Her life was so much more than what happened. I’d love people to remember her, to understand the reality of epilepsy and why SUDEP awareness matters so much.

Hannah’s mum, Louise, has recorded a video to remember her daughter but also encourage families to ask difficult questions of their GP, neurologist and other healthcare providers. She knows they are hard conversations to have because you don’t want to believe that something like SUDEP can happen. “Feel empowered to speak to health professionals about the risks of SUDEP. So you can understand the individual risks and do whatever you can to mitigate the chances of something like this happening. We are left behind trying to make sense of something which is just impossible to comprehend. I’m just learning how to carry this grief and we just miss her so much.”

You can watch Louise’s video on YouTube where she talks about how they encouraged their daughter to live her best life, the impact of epilepsy on the family and how she is navigating her grief. Louise credits the care and support that their daughter received at the Chalfont Centre but is encouraging other families to ask about the risks of SUDEP. 

Louise is currently writing a book of poetry, The Unravelling of Grief which will be available through Amazon next Spring to honour her daughter Hannah’s life. 

If you have any questions about SUDEP, we have information on our website:

https://epilepsysociety.org.uk/SUDEP

For many people, epilepsy is a condition which can be well-managed and has little or no impact on their life. For others, ongoing seizures mean that epilepsy has a long-term impact on them. Like some other medical conditions, epilepsy is occasionally associated with premature death in some people, although this is rare. SUDEP is when someone who has epilepsy dies suddenly and no other cause of death can be found.

If you are concerned about SUDEP, you can talk to your neurologist or epilepsy nurse about your risk as an individual, and how to lower the risk of SUDEP.

You can also talk to our helpline who offer information and time to talk.