EB has contacted the Guardian newspaper following an article which appeared on 30th November that gave misleading information about epilepsy deaths in the UK.
The article; ‘A pioneering initiative is using scans to help surgeons cure children with epilepsy’ in the G2 supplement claimed that ‘every year about 500 people die from epilepsy’ and that deaths are caused ‘mainly by choking, drowning or banging their head during a fit’.
There are over 1000 deaths a year in the UK, the equivalent of 3 seizure-related deaths each day.
Drowning and other accidents do account for some epilepsy deaths, but the article completely failed to mention Sudden Unexpected Death in Epilepsy, understood to account for around 600 of over 1000 deaths a year.
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Our response;
Epilepsy Bereaved is the only charity in the UK dedicated to preventing Sudden Unexpected Death in Epilepsy and other seizure-related deaths and supporting people bereaved by epilepsy. The charity is advised by a panel of experts in the field of epilepsy.
Some of the information contained in the article was incorrect and reflects myths about epilepsy that the charity has successfully challenged over the last 15 years.
You mentioned that ‘every year about 500 people die from epilepsy’. In fact there are over 1,000 deaths a year in the UK the equivalent of 3 seizure-related deaths each day in the UK. You also mentioned that the deaths are ‘mainly by choking, drowning or banging their head during a fit’.
The idea that people with epilepsy choke during a seizure and our suffocated is one that was suggested in the scientific literature in the 19th century, but has been debunked as a major cause of epilepsy-related deaths. Drowning and other accidents do account for some epilepsy deaths, but the article completely failed to mention Sudden Unexpected Death in Epilepsy, understood to account for around 600 of over 1000 deaths a year.
Sudden Unexpected Death in Epilepsy (SUDEP) is a recognised syndrome where a person with epilepsy dies suddenly and no other cause of death is revealed.
SUDEP has been shown to be related to seizures, but what exactly causes it is unknown. The most likely explanation is that a seizure interferes with the part of the brain that controls breathing or the heart.
Epilepsy Bereaved was founded because of the overwhelming lack of information and research into SUDEP and the traumatic isolation to bereaved families that was caused by myths that persisted about how people died.
We would appreciate it if you could address this promptly in the Guardian as it is extremely damaging to the cause of prevention of deaths if incorrect myths persist about epilepsy and also very upsetting for those who have been bereaved by SUDEP.
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Please support Epilepsy Bereaved in challenging this misleading information by writing to the Editor of the Guardian;
letters@guardian.co.uk
Please contact fiona@eb-team.org.uk / 01554 778450 for further information.
