Monday 23rd October is SUDEP ACTION Day, SUDEP (Sudden Unexpected Death in Epilepsy) is a topic I have wanted to cover for a while, but equally it’s a topic I feel strongly about doing justice. So what better time to look at the topic than SUDEP ACTION day, because it is time we took action, a staggering 42% of Epilepsy deaths ARE preventable! NICE guidelines state that ALL doctors should discuss SUDEP with patients but sadly that is not the case, personally I had not heard of SUDEP until I came across the term in a support group in 2011, and my Neurologist never mentioned it until I was pregnant with Noah in 2015 at the age of 29! I have lived with epilepsy for 22 years by this point.
Sudden Unexpected Death in Epilepsy is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. SUDEP deaths are often unwitnessed with many of the deaths occurring overnight and the cause of SUDEP is not yet known.
SUDEP occurs in approximately 1 per 1000 people with epilepsy (1 in 4500 in children), having active seizures puts you at risk of injury and death, and there are certain types of seizures which research has shown increase a persons risk of SUDEP. There are 600,000 people with epilepsy in the UK and 3 people with epilepsy die every day in the UK meaning there are over 1000 epilepsy deaths a year. The best way to lower the risks of SUDEP is by achieving seizure control, in the UK 52% of people with epilepsy are seizure free and 70% could become so with the right treatment.
Risk factors include:
SUDEP Action promote three key steps:
BE AWARE: of epilepsy risks – they don’t need to be scary.
BE OPEN: about your epilepsy and level of risk, talk to others about it.
BE PROACTIVE: don’t ignore your risks, instead put positive steps in place, have regular medical reviews, self-monitoring your epilepsy between reviews.
When I started talking about writing a piece on SUDEP I knew I wanted to include the stories of people, so it wasn’t all facts and figures, so people could see the real and devastating consequences of SUDEP. I want to thank the many who came forward and shared their story, from those I mentioned here to those who wanted to talk but didn’t want their story shared. You have all touched my heart and I’m honoured that you chose to speak to me. The one overwhelming factor that came up time and time again, not one person I spoke to had ever been told of SUDEP by their neurologist. Some had never heard of it until their loved one passed away, some have never been told about it in all their or their child’s years living with epilepsy.
I share Becky’s story with her Mum Sandie’s blessing. Becky was my Mile 11 for the London Marathon this year, so her beautiful face is one that is etched into my brain and always will be. Becky was just 11 years old when she lost her life to SUDEP.
Sandie recalls that they had no knowledge what so ever of SUDEP and the first time it was mentioned was when the coroner’s office called to say that Becky’s death was due to SUDEP. She said they believe it to be an explanation rather than an actual cause, then Sandie’s sister (who also has epilepsy) called and said “ I think I know what happened to Becky” , she had been doing some research online and stumbled across SUDEP Action.
Becky was finally diagnosed with epilepsy the week before she died, despite Sandie fighting tirelessly to get her a diagnosis. An EEG carried out to prove Sandie wrong actually proved her right, Becky had a follow up MRI and Sandie was due to receive the results 3 days after Becky passed away. There was no indication what so ever that she could come to any harm because of epilepsy.
Sandie finishes by telling me “ It has been 13 years but she is still so much a part of my life and who I am.”
This is the first-time Tina’s story has been told, and I am touched her sister Karen chose me to share it and its why I have finished with her story. Thank you for sharing Tina with me and allowing me to see what a wonderful woman she was. Karen lost her sister to SUDEP the day after this photo was taken, she was just 37.
Karen describes Tina as “the most beautiful, loving, selfless, driven, life loving person you could ever meet” and says that her loss is something she doesn’t ever think she will come to terms with. She misses her every single day with every corner of her heart. She said the devastation to their family, the hurt, emptiness, anger, sadness and grief is just indescribable
Tina was an extremely successful electroacoustic engineer, a Samaritan and a world record breaking sky diver, a sport she pursued with such passion but sadly had to give it up after a seizure. Karen explained that her medication had been changed quite drastically in the 48 hours before her death. A medication she had been taking since she was 17 was removed from her prescription, the family believe this was done far too suddenly and 48 hours later she had a seizure in her sleep and died from SUDEP.
After Tina’s death Karen and her parents fought tirelessly to seek acknowledgment that her neurologist had made an extremely careless and ultimately fatal decision regarding Tina’s drugs. At no point what so ever was Tina spoken to about SUDEP, the risks and the known triggers, a fault which was later acknowledge and apologised for during the inquest. Karen adds that as a family they were given no opportunity to put safety measures in place as they were completely unaware of the potential damage that could be done. Tina was home alone when she passed away.
The overwhelming fact that stands out from the many people I have spoken to is that they simply weren’t told of the risks of Epilepsy, more so that SUDEP was never mentioned. So on SUDEP Action Day awareness is the key, even if you don’t normally please share this blog, share a social media post or simply talk to those around you about it. You could save a life.
I dedicate this post to those taken too soon by epilepsy and their families xxxxx
For anybody who needs support please fontact SUDEP Action: https://sudep.org/
NEW Facebook page: https://www.facebook.com/fairyfaye1986/?ref=aymt_homepage_panel
Facebook support group: https://www.facebook.com/groups/739520702798749/
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.