SUDEP Awareness Day
Jane Hanna

I hope my #DareTo Say SUDEP story will encourage as many people as possible to support SUDEP Awareness Day on 23rd October.

My partner Alan was 27 when he died in 1990. We had lived with epilepsy for only seven months before he died suddenly one night. In the months before he died we struggled to manage. We had been told there was nothing to worry about and that if Alan had a seizure, I should put a spoon in his mouth. These two bits of advice were both wrong.

To begin with, I was driven by the grief of losing Alan. He was a human rights lawyer who had helped so many people. I felt a deep injustice that virtually no research and no advocacy movement had tried to save him or others like him.

A Mission Takes Shape

My journey in the first 10 years after his death was extremely painful. It also seemed near on impossible to move forward in a world where the myth held firmly that seizures were benign. I made it my mission to find answers and reduce unnecessary deaths from epilepsy. It was hard; the word SUDEP (which means sudden unexpected death in epilepsy) had not been accepted.

In the 1990s, there was no Internet. Four other women and I spent many painful years gathering families with experience of sudden death and researchers with an interest.

By 1996, we set up SUDEP Action (then called Epilepsy Bereaved), which established a service for families to support the journey we understood only too well. The investigation of a death is an extremely difficult process. The journeys that many families take to help research, raise awareness, fundraise, or rebuild their lives are hard.

Our organization set up a research workshop of 60 international researchers. An international publication followed, bringing evidence and families’ stories to the world’s attention. Families participated in research on the definition of SUDEP, which was presented at the conference and accepted in national guidelines in the U.K. in 2004.

The Power of SUDEP Awareness Around the World

The spell was broken and close working relationships began to develop across the world. It is wonderful to see the SUDEP global movement today. Now, PAME (Partners Against Mortality in Epilepsy) and SUDEP the Global Conversation help to bring a complex scientific subject to the fingertips of clinicians and advocates around the world.

This change is transformative. There is a consensus that SUDEP does indeed exist — that it is a priority that must be addressed — and that it needs to be talked about so it can be addressed.

In the U.K., we found that once policy makers properly appreciated the public burden of epilepsy mortality, it played an important part in driving epilepsy up the agenda, helping research teams win research grants, and spurring clinicians to protect and develop epilepsy services. We have a long way to go, but the evidence on mortality is a vital component of arguing the case for research and services.

Information about SUDEP can be used in a positive way to inform people that some seizures can be risky. If people know there is a good reason not to be complacent about their seizures, it may help inform all sorts of choices, such as taking medications or when to seek medical help.

What is exciting is the real sense today of organisations around the world working together to address SUDEP. International research collaborations are in place. Everyone is pretty clear about the direction for future research — where the gaps are and where evidence is weak. As so many other people daring to speak about SUDEP have said, “Knowledge is power.”

Families’ experiences are as powerful today as when I started, and these experiences can drive change. Whether this change comes from sharing your #DareTo Say SUDEP story in the U.S. or registering your experiences with research teams, it all helps. Just over 400 families have reported their stories to The Epilepsy Deaths Register. The painful knowledge these families have shared can be used to improve understanding about needs and the full devastating impact of each death.

So please support SUDEP Awareness Day this year, wherever you are.

About SUDEP Awareness Day, October 23rd 

SUDEP Awareness Day is dedicated to raising awareness of SUDEP all around the world. Launched last year, the campaign was supported by 45 epilepsy organisations around the world.

This year’s theme is “Are You SUDEP Savvy?” We have some great materials put together working with organisations from U.S., Europe, and Australia and with our partners in SUDEP the Global Conversation. 

For more information about SUDEP Awareness Day, visit www.sudepawarenessday.org. For U.S. specific activities and awareness materials, visit epilepsy.com/SUDEP-Awareness-Day.

Authored by: Jane Hanna OBE, CEO of SUDEP Action and co-editor of SUDEP the Global Conversation.

Based on an article Epilepsy and Sudden Death: A personal view. Epilepsia, vol 38, Supp. 11, 1997:s3-5 and an interview published on www.sudep.org on 2nd June 2014.

 

Authored Date: 
10/2015