I make no apologies for the seriousness of this blog post. It is about saving lives! It could not be more serious! Please take the time to read it and share it with your friends and family.
By now you probably know my story, in 2006 my brother Nathan died suddenly during an epileptic seizure. Nathan was just 32 years of age and otherwise in great health. He was the proud father of his new young son Ben, who at that time was just a few months old. Nathan had night time seizures and other than the occasional bruising Nathan would suffer during a seizure he lived a predominantly normal life. None of us could have predicted the events of the evening of November 10th/11th 2006.
Following a pleasurable day out with his wife and new son, Nathan settled down to watch a Bond movie, he was a big fan of Bond films. By then end of the evening he began to feel a little unwell and went to lie down. It was then that Nathan entered in to a seizure. Only this seizure was not going to follow the usual pattern! During the seizure, whilst unconscious, Nathan showed signs of breathing difficulties. After calling the emergency services, Nathan’s wife and friends started to perform CPR. When the paramedics arrived, they took over this life saving procedure, but after about 20 minutes of trying to re-start Nathan’s breathing the paramedics informed his shocked wife and family that Nathan was declared dead.
The following morning I received an early morning call from our mother informing me of Nathan’s death during epilepsy. How could this be? Nathan had suffered many seizures in the past and had always come out of it a little bruised but otherwise ok. So what had gone wrong on this occasion?
During the next few grief stricken weeks I embarked on a personal challenge to understand what had happened. After trawling the internet and my local library I first came face to face with the acronym S.U.D.E.P. I learned that this stood for Sudden Unexpected Death in Epilepsy. I learned that it is quite rare and that most people who have experienced a loss due to S.U.D.E.P were previously unaware of the risk. This sounded sadly familiar. To my horror, I learned that even though more than 500 deaths in the UK every year are attributed to S.U.D.E.P, it was not common practice for doctors to warn those diagnosed with epilepsy of the risk of S.U.D.E.P. This was also true of my brother. Nobody had discussed these risks with him. This raised the vital question WHY?
To understand this, we first need to understand that not a lot is known about the causes of S.U.D.E.P. The definition of S.U.D.E.P is by its very nature a vague one. If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Whilst we know that it is connected to seizures, why it happens is largely unknown. What is known, is that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This can result in the person stopping breathing or cause their heart to stop beating.
It was felt by the medical profession that as not enough was known about the cause, there was little that could be done to prevent the risk. That being the case, why add worry for the sufferer? Whilst I understand their motivation, it is a flawed concept, and one that needs to be changed. In my opinion and indeed the opinion of everyone I have spoken to who has experienced S.U.D.E.P, it is VITAL that the sufferer is informed of the risks. Why?
Information is power!
If an epileptic is aware of the risks, then they have the opportunity of minimizing the risk of a seizure. Reducing the risks of seizures naturally also reduces the risk of S.U.D.E.P as you cannot have one without the other.
Following Nathans death I setup a Facebook support group which quickly grew to over 1800 members. I was overwhelmed by the stories from those bereaved as a result of S.U.D.E.P. The group joined forces with a number of other Epilepsy support groups and campaigned parliament to recommend that doctors informed those diagnosed with epilepsy of the risk of S.U.D.E.P. Sadly, whilst now more and more doctors are informing their patients, not all do so and neither are the obliged to do so! This needs to change.
In order to make changes we need to raise awareness. This brings me to our challenge. The purpose of our cycle challenge is twofold. 1) To raise awareness of the risk of S.U.D.E.P associated with seizures and 2) To raise money to continue the amazing work that Epilepsy Bereaved do to research S.U.D.E.P and to support families in their loss.
What can you do?
Firstly, promote us as much as possible. Share us on your social media, let people know how important this challenge and what it represents is. Let’s not mince words here, making people aware of this risk saves lives! Secondly, if you are in the position to do so, please sponsor us. Even if it’s only £2, if every reader sponsored us just £2 we would hit our target in no time!
For more information on S.U.D.E.P and how you can reduce the risks please visit Epilepsy Bereaved