blog 84: sudep action day - time to act

SUDEP (Sudden Unexpected Death in Epilepsy) is one of them things, no one wants to think about it, no one wants to believe it happens and nobody believes it will happen to someone they love, that is why this years campaign from SUDEP Action is so very important.

Awareness isn't enough its time to ACT!

I struggle every year with what to write, so much so its Tuesday morning and I’m still working on this. I always want to do the topic justice, I always want to make sure I get the message across clearly. There is no pretty way to write about SUDEP and this isn’t about scare mongering, it’s making sure as many people as possible have heard of SUDEP, they know the risks and know how to try and manage those risks. Its about saving lives.

I always want to do my part of SUDEP Action, and for SUDEP Action Day as I think it is a vitally important message that needs to be delivered. One family I spoke to in the run up to today told me their daughter had only ever had three seizures in her lifetime yet she sadly passed away from SUDEP. It got me thinking about my own epilepsy journey and where my own knowledge of SUDEP fitted within that.

I was diagnosed with epilepsy at the age of 7, I was 25 years old before I had first heard of SUDEP, I was 28 years old, expecting my first child having lived with epilepsy for 21 years before a medical professional ever uttered the word SUDEP to me. HOW is that happening? If I, someone who has lived with epilepsy all this time didn’t know about SUDEP until I was in my mid 20s, how are we supposed to get the message out to the world?
As I said above, I was 25 the first time I heard of SUDEP; it was via a facebook epilepsy support group back in early 2012, before that I had never heard the term. I guess much the same as some people I thought my seizures were not as bad as others and it wasn’t something I should think about, I mean no doctor had ever mentioned it to me so why should I have been worried? Having lived with epilepsy for 18 years before I had heard of SUDEP, was I naive to believe that my epilepsy couldn’t kill me? I clearly was and I worry that there are many others who are in the position I was. 

Fast forward to 2015, I was 28 and pregnant with Noah and the word SUDEP was first uttered to me by a doctor. Now it wasn’t just my life it was my babies life too. I’m slightly ashamed to say that in the years in between first hearing the word and then it being mentioned to me by a doctor that although I read up a little I still lived in a naive, perhaps ignorant, bubble. However in the three years since Noah was born I have spoken to lots of families as well as SUDEP Action and done my research and I know that awareness isn’t enough, it is time to ACT. Its time to look after ourselves and look out for each other, so if you do one thing today share the message of SUDEP Action Day 2018.

So what can you do? ACT!

ASK

What are the risks?

• If you are and adult and have epilepsy, your risk is 1 in 1000.
• If you are a child with epilepsy, your risk is 1 in 4500.
• If you have 3 or more generalised tonic-clonic seizures in a year, you have an increased risk, particularly if they happen during sleep
• If you are being considered for epilepsy surgery, you are considered to be at increased risk
• If you have a drug or alcohol problem, your risk is higher than someone who doesn’t have these problems
• If you have had a recent epilepsy-related injury or are being treated for depression, you are at increased risk
• If you have absence or myoclonic seizures, you are not known to be at increased risk
• If you have very few seizures, you are at a lower risk, but still at risk

How can I reduce my risks?
Taking your medication regularly and reliably.
Speak to your doctor before making any changes to your medication.
Discuss any lifestyle changes such as having a baby or going to university with your doctor.
Avoid excess alcohol consumption and using recreational drugs
Make sure you have regular reviews.
Tell your doctor if your seizures have changed.
Not everyone with epilepsy is at risk, it is important you discuss your risk with your health professionals.
If your medication isn’t working, don’t settle for continued seizures. Ask your doctor what other options there might be. The risk of SUDEP varies from person to person.

Why dont more people know about SUDEP?
Act today and share some information about SUDEP, your one post could make all the difference.


Communicate

Share your experiences….

Share stories of how you manage your epilepsy, hopefully inspiring others and offering them a coping mechanism they may not have thought of before. Is sport the answer for you? Regular sleep?

Talk…..

To your doctors, to your friends, to your family. Explain the risks to those around you and ask your doctors what alternative there is if your seizures are not controlled.

Take Action

Share social media posts,
Retweet information.
Have regular reviews with your medical teams.

Knowledge saves lives.

There are over 1000 deaths a year because of epilepsy and over half of these are related to SUDEP, that number is also likely to be underestimated due to not all deaths being recorded as such. 52% of those with epilepsy are seizure free and it is believed 70% could be with the right medication, controlled seizures reduce your risk, so act now and speak to your medical teams, ask what else could be done. Look after yourself, listen to your body and today share the message.

I have spoke about myself being naive and living in a bubble believing it wouldn’t happen to me or somebody that I know, it has also been, for me, the saddest part of the stories of SUDEP I have heard, families having NO idea that epilepsy could kill. So ACT today, knowledge is power and you may just help save a life

SUDEP is a silent killer, it’s time to make a noise about it.

For information, advice & support visit: https://sudep.org/

Dedcicated to the memory of those lost to SUDEP x


Contact me:
Twitter/Instagram: @fairyfaye1986
Email: [email protected]
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