Epilepsy kills: stopping epilepsy-related death
[Part 1: Facts; Sander JW]
There is a myth which says that epilepsy is a relatively benign condition in which people have seizures here and there but not much more; nothing could be further from the truth. Epilepsy is instead a potentially harmful condition which carries a high risk of premature death, particularly in those people whose seizures continue despite optimal treatment. Almost all studies of the long term survival in groups of people with epilepsy have shown shortening of life expectancy. People are becoming more aware of the problems of epilepsy-related death and it is imperative that we do all we can to reduce the risk.
The increase in the risk of premature death in people with epilepsy is a big problem and one which causes a great amount of angst and sorrow. So what leads to this increased risk? In the initial years after a diagnosis of epilepsy, it seems that the same problem that causes the epilepsy (such as cerebrovascular disease or brain tumour) is also responsible for the increased risk of premature death. Amongst people with chronic epilepsy, however, epilepsy itself is an important culprit, as people with the condition may die as a result of an accident (such as drowning) brought on by a seizure, or from status epilepticus, but particularly from SUDEP. Co-morbidities may also play a role as there is increasing evidence that people with epilepsy are more likely to be affected by these.
There is now little doubt that epilepsy is a major issue when it comes to epilepsy-related death. One question that still needs a full answer is what is SUDEP. There are a few definitions of SUDEP around but they all agree that SUDEP is an unexpected death in a person with epilepsy who was previously well apart from epilepsy and in whom no clear cause for death is found despite full post-mortem examination. It is a baffling condition which brings sorrow and bereavement to many families every year. Indeed, in the UK, it is estimated that there are over 1,000 epilepsy-related deaths every year, and this is more than deaths from AIDS, for example, or asthma. Knowledge about the possible causes of SUDEP is slowly building up. It is now generally accepted that the physiological event which results in SUDEP is likely to be triggered by a seizure. This is due to the realisation that, almost invariably, SUDEP seems to happen in the aftermath of a seizure. It may, however, involve different cardiac, autonomic, and respiratory pathways in different people or there may be an overlay of some of these potential mechanisms in different people. There is also a growing understanding that genetic factors may play a role in SUDEP. A number of research projects are currently underway to elucidate in full the underlying causes of SUDEP. It is very likely that we will eventually find that there is no single mechanism which occurs in every case but rather that there is a combination of several mechanisms and triggers which may act and interact in different ways in different people. Knowing the mechanisms for SUDEP is essential to enable us to identify effective preventative measures to stop its occurrence, thus decreasing the burden of epilepsy.
People with epilepsy also die prematurely as a result of conditions other than SUDEP. Accidental deaths take a toll, as well as other medical conditions that people with epilepsy have concomitantly with epilepsy.
SUDEP: continuing the Global Conversation deals with epilepsy-related death and covers the impact of epilepsy-related death and its burden from the public health perspective. An overview of the premature mortality in several countries, some from the developing world, is given. It includes information about what is currently known about SUDEP and how to interpret the latest cutting edge research in this context. It reviews the existing body of evidence and sets the scene on how this helps to understand the recent advances in our quest for knowledge about epilepsy-related death, identifying the main obstacles that still remain to make the world a safe place for people with epilepsy. All the authors are well known for their contributions to the efforts of elucidating this puzzle of epilepsy-related death and it makes interesting reading for all those with an interest in this area.
Josemir W Sander
UCL Institute of Neurology, UK
Stichting Epilepsie Instellingen Nederland (SEIN), Netherlands
How to cite:
Sander JW. Epilepsy kills: stopping epilepsy-related death. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.