I spend some time trawling the web for yet another person who died in SUDEP circumstances. This is not as straightforward as it may seem. Here in the UK nowadays coroners generally clearly define deaths as SUDEP when appropriate. That is not the case in other countries. Indeed in many countries epilepsy itself is still carries considerable social stigma, and thus talking getting a SUDEP verdict through an autopsy could be a challenge.
Not only that, even in the UK, any death could be put down to other circumstances. Take this death in Shipley, Yorkshire. Here we have a mum, Tracey Swatton, loved by her family who died aged 37. From the age of 4 she had epilepsy, and the family believe she died primarily because of a measles jab taken at the age of four. That is the measles jab possibly triggered the epilepsy.
Well, it may be true that the cause of the epilepsy was the measles jab. A doctor in the newspaper report indicates that the chance of that happening was 1 in 20 million. But to me that does not matter so much as what actually caused the death. Without access to the autopsy (and considerable coroner skills) I can only go from the description in the newspaper report.
And what do I read? "In one week she had 137 fits". Alo we read “We really have no idea at the moment. We think she probably had a fit and could have fallen but we’ll have to wait and see what the tests will say at the inquest." And so, here we have a person with a epilepsy originating in childhood, who died unexpectedly, unwitnessed and oh, so suddenly.
Certainly I do not wish, in writing this to add to any feelings of grief in the family concerned. I know my own, my family's feelings when we found that our daughter died SUDEP circumstances. For us we had to some extent to relive the original pains.
But clearly SUDEP is very often under-reported, and if that is true here in the UK then it is many-times under-reported in many other countries.
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