SUDEP: My Cousin Died and I Don’t Know Why

I wasn’t familiar with the term SUDEP until March this year. My family and I had received a devastating phone call, informing us that my cousin Felix (aged 20) had died. He was epileptic and so initially it was thought his death was caused by a seizure. Later on, word from the coroner came who concluded that Felix’s death was SUDEP. None of us knew how to react because no one knew what SUDEP was or what it meant. Since then I’ve spoken to many people, none of which knew anything about this alien term. Unsatisfied with the lack of knowledge around SUDEP, it made me wonder: how many people actually know what SUDEP is?

SUDEP stands for ‘Sudden Unexpected Death in Epilepsy’, meaning that an epileptic person dies unexpectedly and with no identifiable cause of death. And although we were given a cause for his death, It didn’t answer the questions it left us with. We still don’t know exactly how or why he died and it turns out, neither do the experts. What’s more, it is a particular risk for young people.

Half a million people in the UK suffer from epilepsy. It’s one of the top 10 causes of premature death and there are roughly 3 epilepsy deaths a day in the UK. SUDEP is a fairly rare occurrence, thought to affect approximately 600 people a year in the UK yet it is a risk to all who have epilepsy. It’s more prevalent in teenagers and young adults, especially those who have frequent seizures; the more seizures a person experiences, the higher the risk of SUDEP. Pathologists have theorised that SUDEP may be caused by electrical storms in the brain which disrupt the functions of the heart and lungs, causing cardiac and respiratory complications. However, there is little information on the subject and it’s unlikely that a singular cause will be found which explains all SUDEP cases.

The term: Sudden Unexpected Death in Epilepsy is so bluntly accurate. Every Summer since I can remember both my cousin’s family and mine would spend a week or two together in Cornwall by the beach. My very last memory I have of Felix is roasting marshmallows over a glowing bonfire on the beach just outside our house. I still struggle to accept the fact that up until this point, these will be the only memories I’ll ever share with him. It’s a loss his family and friends feel everyday and it’s sad to think there are other families out there experiencing the same thing. There are many people working on discovering more about SUDEP but still so many who don’t know anything about it. I’m writing to help spread the word and I hope you will too.

If you want more information about SUDEP and how to prevent it, how to get involved, or find other families who’ve experienced a loss due to SUDEP, visit the official webpage of the charity Sudep Action - www.sudep.org

USEFUL LINKS

https://sudep.org/about-us

https://sudep.org/epilepsy-deaths

http://www.sudepaware.org/MSOS_campaign/eToolkit/SUDEP_2S_YAdults_Teens_w-Epilepsy_6-12.pdf

https://www.epilepsysociety.org.uk/sudep?gclid=CjwKEAjw47bLBRDkgorklobUklESJAAGH4-Rg7DyIRXlleAHZSorHqsfn5QMt5kV7H2RHmOSn-S_rRoCfRDw_wcB#.WW4esIjyu00

COMMENTS

#Sophie Pierce: Thank you Ruby for writing this important piece. More people need to know about SUDEP so that ultimately we can find out why it happens and find a treatment to prevent it happening.Like · Reply · 3 · Jul 20, 2017 12:00pm

Judy Marshall: Works at Self-EmployedHi Ruby. Like you, I had never heard of SUDEP until your lovely cousin died. Thank you very much for writing this - I will share it with others to spread the word. More people need to know. Treasure your memories of Felix xxLike · Reply · 2 · Jul 20, 2017 3:05pm

Matthew Hale · Plumbchoicelondon.com at Self-Employedmy wife and i only met felix once 2001..nice kid..so very sad..my friend alison also died of this in wimbledon in 1996 RIPLike · Reply · 1 · Jul 21, 2017 9:26pm

Sandie Scrivens: This is beautifully written Ruby. I too had not heard of SUDEP before losing my 11 year old daughter Becky in 2004. With the support of SUDEP Action, I now do everything I can to raise awareness of SUDEP in the hope that one day, other families won't have to suffer a loss like we have with Felix and Becky. Ps Becky's best friend's name is Ruby. xLike · Reply · 1 · Jul 24, 2017 10:07am

Katherine Shields:There is so much more, and more are dying than stated because of the death needing to be registered and needing wihtnessed events of seizures prior. Nocturnal seizures are common and rarely wihtnessed if they sleep alone. All these deaths are not counted because we are too busy labeling. Diet & genetics play a massive roll in this outcome but these factors are outside of the realm of modern medicne. It is a myth that frequent seizures are required. My son died on his third in 4 years & it wasn't the seizure but because we where not there to turn him on his side so he aspirated. He didn't have ...See MoreLike · Reply · Jul 24, 2017 11:46pm

Julie Hunt · Artist at Work from homeI never realised what SUdEP was, even after my son died in a fall - he had epilepsy but had a full frontal lobotomy to remove part of his left brain. He had a fall a year later from a window. We wern't informed that the epilepsy could return within a year. until recently i thought SUDEP (Sudden unexplained death in Epileptic Patients) or that was what I thought. He had fallen through a window before but his fall was cushioned by the dormer window. To this day I do not understand it, but his last fall has not been recognised officially as epilepsy related. Apparently it means sudden unexplained death - but with no known cause. Please correct me if I'm wrongLike · Reply · Jul 25, 2017 11:00am

Gillian Webster · BuckfastleighA very well written and informative piece, Ruby. Understanding is so important. Such a sad loss for you all.Like · Reply · Jul 25, 2017 1:20pm