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Get healthcare professionals talking about SUDEP

This petition had 496 supporters


Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. (SUDEP Action). 

The UK has 600,000 people with epilepsy with over 1200 epilepsy deaths each year in the UK; approximately half of these are due to SUDEP. This is more than sudden infant death syndrome (SIDS).

I lost my sister, Eve in 2005 (aged 21) as a result of SUDEP. Devastatingly, since then ten of thousands more have passed away. Fantastic organisations like SUDEP Action are researching and raising awareness but more needs to be done. 

The epilepsy community is ready to transition the resounding voices that currently echo the walls of online forums to the medical community. 

NICE have provided guidance for health professionals, explaining that those with epilepsy (and their families) should be given information about SUDEP. Not enough is being done to discuss the risks with patients, with some people never knowing that SUDEP exists. 

Please sign this petition to encourage the medical profession to be braver, to talk about the risks with as many patients as they see, armed with information about the risks and how to manage them.

If you have epilepsy

Although there is no way of preventing SUDEP, risk factors can be managed. Risks are low and vary from person to person (depending on the type of seizures you experience). It's important that reach out to a medical professional.

1. Hanna N J, Black M, Sander J W. et al: The national sentinel clinical audit of epilepsy related death. London: The Stationary Office, 2002

 



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