SUDEP Action is launching SUDEP Awareness Day-23 October, raising awareness and promoting ways for people with epilepsy to reduce their risk of Sudden Unexpected Death in Epilepsy (SUDEP).
Rosey Panelli, SUDEP Action’s Australian International Research Officer said ‘Epilepsy does not get the attention it deserves. It is important that people with epilepsy are well informed about the risks associated with the condition and what they can do to reduce risk. ‘
On SUDEP Awareness Day, SUDEP Action will be urging people with epilepsy, through the tag line ‘Be smart, be safe’, on ways in which they can reduce their risk via www.sudep.org/sudep-awareness-day-2014
SUDEP Awareness Day encourages people with epilepsy to be open about their condition, to report their seizures and to take their medications regularly and as prescribed. It also encourages doctors and nurses to talk about risk, including the risk of SUDEP, on or soon after diagnosis.
To commemorate those who have died from SUDEP, SUDEP Action will also be reposting and sharing photos where the families decide to share them on their Facebook.
People around the world can help support SUDEP Awareness Day as they
- Like and share our SUDEP Awareness Day Facebook posts and Tweets.
- Join the ‘Suck for SUDEP’ campaign www.youtube.com/watch?v=1rOAs_YTXdI
SUDEP Action was founded in 1993 as a self-help group for families affected by SUDEP before SUDEP was defined and recognised. It was the first organisation in the world to champion the SUDEP cause and is leading international action. Today Epilepsy specialists and organisations in most countries are well aware of SUDEP and the evidence that generalised tonic seizures are the main risk factor, but barriers remain to communication between doctors and people with epilepsy and their families.
Jane Hanna OBE, Chief Executive for SUDEP Action commented: ‘Most people with epilepsy will live long and healthy lives, but we feel it is important that those who are at risk, however small that risk may be, are given the opportunity to make the right lifestyle choices. They can only do this if they have an open conversation with their health care provider. There are positive steps that can be taken to reduce risk and it can be empowering for people to be involved in managing what is known to be a difficult condition.’
Australia: contact Rosey Panelli on 0438931120 or [email protected]
Link to Australian SUDEP story http://www.mmg.com.au/local-news/seymour/cutting-edge-epilepsy-research-1.82474
In the UK contact [email protected]
Please provide the following website link www.sudep.org/sudep-awareness-day-2014
Epilepsy is one of the top-ten causes of early death. Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions.
At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:
• To prevent deaths
• To be supported
• To be involved
We have won national and international honours for our achievements to date, but we recognise there is much more work to do.
There are five key strands to our work:
• Providing information on SUDEP and risk in epilepsy
• Offering support when someone has died
• Involving people to help effect change
• Sponsoring research and education to prevent future deaths
• Capturing data through the Epilepsy Deaths Register