Why schools should teach students about epilepsy

Zoe Gude explains why she would like students to be taught about epilepsy in secondary school, so that they understand what it is like to live with seizures and the side effects of medication.

I have had epilepsy for most of my life, so I haven’t known what a life without epilepsy is really like. When I was two years old I was diagnosed with complex partial seizures with secondary generalisation. My parents had hoped by the age of 12 or 13 I would ‘grow out’ of them, but unfortunately that wasn’t the case.

Over the years, having tried all the AEDs on the market, my epilepsy was seen as drug resistant. Growing up with epilepsy  affected all areas of my life from education to making friends at school.

I was told by my neurologist that I ‘wouldn’t get any GCSEs’. I thought, ‘what am I supposed to do now? Just give up?’ I felt angry and I was determined to carry on and pass my GCSEs.

Getting my degree

Fast forward to 2010 and somehow I’d managed to pass 6 GCSEs, get a BSc in Psychology and a Master’s degree in epilepsy! It wasn’t easy by far, especially having generalised seizures on an almost daily basis and frequently ending up in A&E, needing stitches from yet another laceration to my chin.

What I wasn’t prepared for however, was not being able to work when I’d graduated with my Master’s degree. I’d paid the ultimate price (as far as I was concerned anyway) as I had needed more medication due to the severity of my seizures so I could complete my Master’s.

This meant frequently falling asleep during the day and feeling like it was time for bed (even though it was morning), as well as having seizures on top of that. So that was that – keeping a part time job would be impossible, let alone something full time!

Something saved me

I felt so worried and depressed, having just got a Master’s degree (which to me was a dream come true in itself) and not being able to go out to work and fulfil my dreams. But after a while I realised, having been a member of several online epilepsy support groups, that I could use what I had learnt about epilepsy to help other people. It felt as if I had suddenly been ‘saved’ and I had a purpose again.

I became a moderator of an online epilepsy support group and then in May 2018, I finally decided to create my own online epilepsy support group. The prospect of it seemed daunting at first but I knew at the back of my mind I had the knowledge and personal experience of epilepsy to be able to do it. So with the help of two other administrators and four moderators I created an online epilepsy support group called Epilepsy Stronger Together. 

Hoping for change 

I have read and seen so many people every day on my support group speaking about how family members ‘don’t understand epilepsy’, or how their family 'refuses to believe I have epilepsy’, or even in rare cases I’ve heard ‘my family thinks I am possessed!’ Yes, some countries still believe people with epilepsy must be connected to the devil.

It is so disheartening to read these stories on a daily basis so I decided that it’s about time something should be done. After all, ignorance can only be tackled if we start by educating people.

After a lot of thought, I decided to come up with a petition on Change.org, to try and get epilepsy taught as a proper subject in PSHE lessons in secondary schools.

This isn’t about teaching students what to do if someone has a seizure - schools will already be obliged in 2020 to teach students what to do if they saw someone having a seizure. This is about epilepsy itself - teaching them what epilepsy is, what causes it, who is affected by it - all the basic things about epilepsy that people should know. 

Why is this important?

This petition is important because for starters, epilepsy isn’t rare. It affects almost 1 in every 100 of us. In the UK, 1 in 20 of us are likely to have a one-off, unprovoked seizure in our lifetime and 1 in 50 of us will develop epilepsy at some stage in our lives. That’s quite shocking, right? So how is it today, that so many people don’t know anything about epilepsy?

This will go so much further than teaching children what epilepsy is. They will pass the knowledge on to their families, and epilepsy will become a subject that is discussed, not something that it taboo and makes people feel embarrassed or uncomfortable; the word ‘epilepsy’ would become a word that isn’t surrounded by stigma.

Education of epilepsy would help eradicate the stigma and people perhaps wouldn’t be accused of ‘faking’ their seizures. Let’s make this often debilitating disorder something which is openly spoken about and help those that live with epilepsy. Let’s educate, help people understand and stamp out the stigma.

In memory of Paul

I would like to dedicate this petition to Paul Underhill, a dear friend of mine who sadly passed away on 19 September. Paul, like me, had epilepsy and worked with me to come up with this petition. He was very passionate about epilepsy awareness so this would be a great legacy for him.

Paul leaves behind his wife, four beautiful children, two brothers and his parents. His family described Paul as, “a fantastic father who was very kind hearted, geeky and artistic, with a sense of humour and warmth that affected everyone he came into contact with”.

Help me, in the memory of Paul Underhill, make epilepsy education in PSHE lessons in secondary schools a reality by signing this epilepsy petition below and by using the hashtags #epilepsyPSHE and #inPaulsname on Twitter. 

Zoe's petition

You can sign Zoe's petition here: http://chng.it/nBxVRg2h