Transforming Lives - ran from 18 May to 24 May
SUDEP Action helps transform lives by improving risk awareness in epilepsy. Did you know that Epilepsy ranks in the top ten causes of premature deaths, many of which are potentially avoidable? Many young and healthy people have lost their lives to epilepsy and in the UK more than 3 people die every day. SUDEP accounts for at least half of all epilepsy deaths in the UK and the cause is not fully understood. Sudden Unexpected Death in Epilepsy (SUDEP) is used when someone with epilepsy dies suddenly - often after a seizure that involves loss of consciousness. But, it is important to know that there are many different types of epilepsy and therefore not everyone is at risk.
During Epilepsy Week we talked about :
- The Epilepsy Deaths Register which supports research in order to prevent epilepsy deaths.
- Our Call for Openness campaign aimed at encouraging professionals to speak to their patients about epilepsy risk/SUDEP.
- Our Bereavement support service – encourage someone bereaved by epilepsy to call our support line and not grieve alone.
The Epilepsy Deaths Register
Help us transform lives by supporting prevention of unnecessary deaths. Report any epilepsy death you might know of to The Epilepsy Deaths Register. SUDEP Action launched The Epilepsy Deaths Register to support research into all epilepsy related deaths. To help prevent future epilepsy deaths, researchers need to find out what happened in as many cases as possible. You can report a death no matter who you are including: relative, friend, doctor, nurse, coroner, procurator fiscal or pathologist.
Bereavement Support Service
There are about 1150 epilepsy related deaths every year in the UK, of these, around 500 are SUDEP deaths which are sudden and unexpected. In many epilepsy deaths, the person is young and healthy and their family, friends and community as well as the doctors are left traumatised by the shock. SUDEP Action provides bereavement support for people who have lost someone to epilepsy. Help us transform lives, tell someone about our bereavement support service.
Call for Openness
Most people with epilepsy live long and healthy lives. Like any condition there are some health risks. Most of the risks of having epilepsy are related to seizures. Trying to stop them may be important so that people can get on with their lives. Seizures are one of the main risk factors of SUDEP. Therefore it is important that people with epilepsy look after themselves and do all that they can to minimise their risk by obtaining seizure freedom where possible. As part of our Call for Openness campaign, we are encouraging health professionals to talk to their patients about epilepsy risk/SUDEP to help patients look after themselves better.
How you can do this
Give our SUDEP Explained and Epilepsy Deaths Register leaflets to a health professional near you. Download our leaflets
Raise awareness where ever you go with our SUDEP Action Badges at only £2 each
Share a picture of yourself and tell us how you are raising awareness to help transform lives with the caption – ‘support SUDEP Action, help raise awareness of epilepsy including SUDEP, to donate £3, text NEWS14£3 to 70070’.
Help us transform lives, support our work by donating £3, text NEWS14£3 to 70070 if you are in the UK. If you are outside the UK you can make an online donation and share the link to the donate page on your Facebook or Twitter.
As part of National Epilepsy Week SUDEP Action took part in an Epilepsy Clinic on the healthtalk website.