August 25, 2014
I have never met Emily, but a week ago I took part in a crazy 11 mile adventure in her name.
In December 2012 aged just 19 Emily was found dead in her room at University by her friends, she had died in her sleep from Sudden Unexpected Death in Epilepsy. No-one knows exactly why this happens and despite it claiming the lives of more than a thousand people a year, not enough research is being done.
Earlier this year when I was asked by my sister-in-law to take part in Tough Mudder and join her fundraising team I knew very little about SUDEP or indeed her special younger cousin Emily, but after we finished the race last Sunday I had the privilege of meeting Emily’s lovely parents and I knew I wanted to do whatever I could to help raise awareness.
SUDEP Action is a small charity working tirelessly to try and prevent the three epilepsy related deaths that occur EVERY DAY in the UK. They support bereaved family and friends, promote awareness in the medical profession and in the community and fund research into these deaths.
Emily developed epilepsy at 14 years old and had only 4 seizures in total living a perfectly normal life. So normal that she probably didn’t really believe that she suffered from epilepsy at all. She took tablets and generally got on with her life. Emily was sporty and played hockey for her county and for the West of England before going to Uni. Her mum said she couldn’t imagine Emily doing a Tough Mudder though as she wasn’t very brave. She was a naughty and funny girl though once turning up to hockey training wearing her bra over her shirt so that she would be told off and sent to change and would therefore avoid the rain and make her teammates laugh!
Young people are generally more at risk from SUDEP and doctors and consultants are reluctant to tell their patients and parents that death is a possibility. The charity believes that knowing the risks is vital so that people can make informed choices about taking their medication regularly and keeping in contact with their doctor. Young people at university are a particular risk as they leave home for the first time, visit their new university doctor (who sometimes do not receive their medical notes for three months), often drink more alcohol and stay out later and have to rely on themselves to remember to take their medication regularly.
I asked Emily’s mum Rachel what she though of the day, watching us complete the course (she took all the wonderful photos of me covered in mud), she said
As a spectator it was such a fun day, as a participant the word ‘fun’ is probably not so appropriate! I was thrilled when Bex told me that they were going to get a group of friends to do Tough Mudder for SUDEP Action as it’s important to us to help the charity and keep Emily’s memory alive. I thoroughly enjoyed the day – I had all the excitement but none of the pain, bruises and mud! It gave me a thrill to see all the orange vests together in a team and to see you all smiling so much while you were doing it.
Awareness of SUDEP is so important. There are thousands of people with epilepsy, some severe and some, like Emily, for whom it was merely a case of taking tablets to completely control it. Many of these people and their families are still unaware that it is possible to die from it. Everyone considers the possibility of someone hitting their head or ‘swallowing their tongue’ but many have no idea that they could just die in their sleep for no apparent reason.
The charity are hoping to trial a new miniature wireless apnea device which will alert family or friends if the wearer stops breathing. This will save lives and might have saved Emily’s. The charity needs to raise £165,000 to trial the device. Sadly most donations to the charity are raised by newly bereaved relatives and their family and friends. If a larger external donor could be found the charity could do so much more.
I know I often ask you guys to support the various fundraising causes I get involved in, and there is such a thing as fundraising fatigue, but if you could spare a few pounds for this important cause I would be really grateful. Equally, please help raise awareness by talking about this terrible risk, especially to teenagers who often think they are immortal.
You can donate to this amazing cause via our justgiving page or if you are in the UK the easiest way to donate is to text SUDE01£2 (or an amount of your choosing) to 70070 to donate just £2. If all of my followers did that today over £20,000 would be raised in one go…so why not do something awesome today.