Its only Wednesday and already I feel like someone owes me a day. Mum and I are sat here ready to submit to the week, on the condition that we can watch Holby City and scoff this quite frankly blissful birthday cake. I have to say that that is hardly a compromise.
With Epilepsy Awareness Day being so close I wanted to share with you something that really made me think. I normally try and get my head down live my life but this really made me stop and think.
It was a conversation that I had with some medical professionals and I was waiting for a time to share it. Now is as good as any. So here are my thought on it.
Last week I sat freely discussing a topic that I had never openly discussed with ANYONE before. Despite being peppered with literature and efforts to raise awareness in hospitals and on social media. I have got to the 31st year of my life without the conversation about SUDEP, this was the first. It was like the first thing that we did was address the elephant in the room. In fact we didn’t address it, it sat down had a coffee and lead the bloody conversation as normal and as plain as day. It was a breath of fresh air.
And for someone who thought that they knew about epilepsy, I’m ashamed to say that I knew very little really about SEDEP. I knew what it stood for but this was a 90 min conversation and I used that up pretty quickly.
Now the question I was asking myself on the walk back was. Why had I never discussed it? I’d had information. But who reads every leaflet (sorry if you do)? Who really wants to know about this topic… Really? I never did in the past.
But I do now. I want to know as much as they will tell me. This is because prevention has served me well so far.
But what will they tell me?
So this was what we discussed. What did I know about SUDEP and did I want to know? There was more but I don’t want to be inaccurate, that’s it in a nutshell.
I’ve already told you the first question. What did I know…? Well, what it stood for. I am ashamed to say that I figured out what SUDEP was, from its name. However I had never in my 23 years of epilepsy ventured beyond that. Even worse I see articles every day if not hour on twitter that could tell me more. But I have never clicked on them. In my defence I am now well informed.
Now these might sound like easy questions that were posed to me, however there are so many variables that make sharing information more complicated. But this doesn’t change MY opinion whatsoever. A high risk patient is a high risk patient, and there are preventions that people can take.
What variables? Well, what if you have a person with epilepsy who has uncontrolled seizures and also lives and manages depression and anxiety. Is it right that your life balance that you carefully navigate, be tested by being told that you are at risk of SUDEP? But with the shoe of the other hoof. Is it right and fair that this information be withheld ‘just in case’?
What do you think?
Variable number 2: You have a child with uncontrolled epilepsy whose parents chose not to tell their child the risk of SUDEP. This child moves into adulthood, does the Dr tell the young adult of their risk?
What do you think?
I strongly feel that all people with epilepsy should be aware of and discuss the risks of SUDEP, however my opinion is obviously just that, my opinion. I say all people because our levels of control can and do change with no warning. Then before we know it our quality of life has changed and people who were of low risk are now no longer of low risk. What we thought and hoped was irrelevant to us is now very relevant to us. Therefore the information that we were given ‘just in case’ now becomes a formative measure for our daily epilepsy routine.
As I mentioned earlier, SUDEP is a particularly traumatic topic to discuss for many. It directly links epilepsy and death; and that it happens to otherwise healthy people. We all find it hard to talk about, and to negotiate the link that we have with it. In the twitter community we support each other with a great deal of sympathy and empathy. We all talk freely and openly and quite frankly excellently about AEDs, seizures, side effects, injuries this list goes on. To some extent, we all have experience of these, we all have something to add. I wish we could have a more open dialogue about SUDEP. We do everything else so well.
The risk factors for SUDEP are here , you’ll notice that routine is the key. I’m sure many of us can relate to that anyway. I find that hard sometimes especially when you think it isn’t working.
Thanks for reading my post, I will happily reply to any comments. That is unless you are spamming me with some sort of attempt to sell sports wear or contact lenses.