Getting to know SUDEP

For anyone who has epilepsy one if the stigmas they have is the word "suffer."  Not only do they have to suffer the actual aggravation of a seizure but also the have to suffer what other people think of it.  Some cultures may still think that you can somehow catch epilepsy, as if it was a carried by a virus.  That's rubbish of course, but even if people do not think that, then the actually drama of seeing some seize up for the first time can be upsetting for them.  Of course that drama increases the grander the mal is.  And so when coming out of a seizure many people with epilepsy end up saying sorry.

So the person suffering the seizure ends to apologising just for having had a seizure.  So not only have they had to "suffer" the incident itself and deal with its physical affects but also now they have to explain & justify themselves.  Given epilepsy seizures happen at random then they will inevitably happen in front of a new person or group of people whom you have never met before.

I won't go on on that subject.  I don't have epilepsy, so it is not my place to lecture anyone who has it.  But I am trying to understand what it is like to hear the word SUDEP.  I am trying to understand the realisation that one might actually die of SUDEP, especially when this is in contradiction to much of medical advice.  Before I can understand that I must try to understand what it is like to have a fit.

Anyway now to SUDEP.  "Yes", says the doctor or specialist", you could die - you could fall in front of a bus or drown, but you can take some easy lifestyle precautions to minimize such a risk.  For instance you could stop swimming."  And never the word SUDEP is mentioned.  Never the mention one might actually die from epilepsy per se.  And if it is mentioned then it is couched with words like "rare".  At which point any epilepsy sufferer (oops, that word again) would switch off from the conversation as fast as possible.

Yes it is rare.  But rareness is an odd word.  It happened to my daughter: my daughter died of SUDEP.  However after Jane died I found out that not only was SUDEP "rare", but also Jane was low risk.  I now know very different, Jane was in some ways high risk.

One of the first web pages on SUDEP I found was on the UK official health website patient.co.uk,.  This implied high risk included keywords and phrases such as MALE, NOCTURNAL, POOR SEIZURE MANAGEMENT.  None of this applied to our daughter - and yet she still died.

The truth is that that web page did not tell the whole story.  I believe the web page has now been updated, after I made a complaint.  However even now it will not tell the entire story.  Even now your doctor may not tell you the entire story.  That is for at least a couple of reasons:

1. Your risk of SUDEP needs to be assessed by an expert specialist.  Risk varies dramatically with your lifestyle and your kind of Epilepsy.
2. Also, historically research into SUDEP has been almost non-existent so assessments of risk may be based on insufficient access to quality research.

Getting to know SUDEP is a journey.  It starts with an awakening to the risk of death.  It continues with research and acceptance.  It then moves onto a specialist assessment of the the risk to YOU.  And only then can you take proper steps to help avoid SUDEP.  Finally it is a matter of helping those around you know the limits of a normal seizure.

I am sorry if these words are not easy to read.  But we cannot duck the issue.  SUDEP kills, and in ignorance SUDEP kills more people needlessly.

Had my daughter been alive today what would she have said had I mentioned SUDEP?  She would have probably told me to shut up, it wasn't my problem and walked off in a serious huff.

Sadly I never had the chance for Jane to get very, very angry with me.