Becky (story told by the mom), UK

So what’s my story? Well it’s actually Becky’s story that I’d like to share with you. I also want to talk about SUDEP – that’s Sudden Unexpected Death in Epilepsy. Thankfully it is rare, but epilepsy specialists are still trying to find out what causes it so we can prevent it from happening. Using UK statistics as an example, there are around 600,000 people in the UK with epilepsy and around 1,000 – 1,200 deaths a year. The majority of epilepsy deaths are SUDEP. Although not enough is known about SUDEP causes, it has been established by research that at least 42% of SUDEP deaths are potentially avoidable with good seizure control.

I write this the day after what would have been my daughter Becky’s 23rd birthday. Becky passed away in May 2004, 11 years ago and 3 months short of her twelfth birthday. Becky was a happy, healthy, bright and lovely girl who had no illnesses other than very occasional night-time seizures. These started around age 10, at first at 6 monthly intervals and then monthly for the last 3 months of her life. Tragically, Becky’s epilepsy was misdiagnosed as migraine from her first seizure until the week before she passed away, so she was not on any anti-seizure medication which doctors now believe would have controlled her seizures and most likely saved her life.

Since losing Becky, I have devoted my time to learning what I can about SUDEP so that I can raise awareness in people with epilepsy and with the medical profession. The medical profession who, despite guidelines in countries including the UK advising them to discuss risk of SUDEP with their patients, continue to withhold this information for fear of frightening people.

As a bereaved mum who has met many new friends through SUDEP groups and charities who have also been bereaved by epilepsy, it does not make sense that something that could often be prevented through good seizure control, is not shared with the very people who could be affected by it. I urge everyone with epilepsy to talk to their doctor, epilepsy specialist, epilepsy nurse or whoever you are seeing to talk about SUDEP risk and how it can be reduced. The main way of reducing risk is to work with your doctors so your seizures are as well controlled as possible.

Find out about SUDEP triggers such as not taking your meds on time/missing or suddenly stopping meds, having night-time seizures, insufficient sleep, excess alcohol. Information on SUDEP is available from SUDEP Action (www.sudep.org), SUDEP Global Conversation (www.sudepglobalconversation.com) and other epilepsy charities.

Please live life to the full, stay safe and remember that your risk can change over time. I really hope that sharing Becky’s story encourages people to find out more about SUDEP and how individual risk can be reduced.

- August 5th, 2015

Contact info:

Twitter: @SandieScrivens