Understanding and supporting young people with Epilepsy

By Shamindri De Sayrah

What is Epilepsy?
Epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body. This disruption causes seizures.
There are over 40 different types of seizure and every young person’s epilepsy is unique to them. In order to be diagnosed with epilepsy, a young person must have had at least two seizures.
In most cases, epilepsy is well managed and seizures are controlled, but it is a very serious condition and can be life-threatening. Epilepsy is the fourth most common neurological disorder and affects people of all ages.

Understanding Epilepsy
Epilepsy doesn’t just affect a young person when they’re having a seizure, it can affect them every day. It can have an impact on their learning, behavior, emotions and relationships.
Something to remember is that teens with Epilepsy are four times more likely to experience a mental health problem than other young people. Which can result in depression, anxiety etc. being brought on as a side effect.
Seizures can occur at any given moment, so its always a good thing to be prepared. When you have epilepsy the constant fear of having a seizure can be worse than a seizure itself.

What can trigger a seizure?
Here are some of the seizure triggers that have been reported by people with epilepsy:

• Not taking epilepsy medicine as prescribed
• Feeling tired and not sleeping well
• Stress
• Exerting yourself physically
• Alcohol and recreational drugs
• Flashing or flickering lights
• Missing meals
• Having an illness which causes a high temperature

How can I help someone having a seizure?
Keep other people out of the way – They don’t need an audience
Clear hard or sharp objects away from the person – The person will not be aware of what they are doing and they could hurt themselves or others
Don’t try to hold them down or stop movements – Give them room and time, they will calm down eventually.
Immediately place them on their side – To help keep airway clear and to keep them from choking. Don’t put anything in their mouth.
Look at your watch or phone at the start of the seizure – Make sure you time its length.
Most importantly, be there for them once it’s done.

My Epilepsy story
Living with this diagnosis also meant having to live in fear. Fear of when my next seizure would occur, and not just how it would affect me, but how it would affect those around me. “Will it happen while I’m out with my friends?” “Will it happen while I’m at work?” “Will it happen at school?” “Will it happen while I’m at the movies?” The sad truth is, a seizure can happen when you least expect it. It’s the before and after that’s the worst.
My epilepsy has affected my mental health, my memory, my studies, my weight and basically life in general. When I was younger things were a lot worse, my seizures were more frequent, much stronger and lasted much longer, and I couldn’t stop them. I spent so much of my life in hospital, and it wasn’t just me going through this, it was my family too. 15 years later and I’m much better, better than I have been in years when it comes to my epilepsy, thanks to a new doctor and new meds. I haven’t had a seizure since January 2020. I’m still learning new things about my diagnosis and myself, but one important thing to remember to anyone who has the same diagnosis, never let having epilepsy define who you are or who you should be. That is entirely up to you.

For more information visit https://www.epilepsy.com/ or https://www.youngepilepsy.org.uk/.
When you live with epilepsy, uncertainty is the new normal.