Derek was diagnosed with epilepsy when he was a young boy. He shares the challenges he has faced whilst living with epilepsy and what he would say to others who have been recently diagnosed.

Can you tell us how you got diagnosed with epilepsy?

When I was 11 months old, I caught measles and started having febrile convulsions. I would have more and more, and they would increase to around 100 per day.

I attended a doctor’s appointment with my mum, and they said I did not have epilepsy, even though my mum said I had lots of seizures.

After an EEG scan, I came out of the doctor’s appointment and then had a seizure in reception.

A member of staff ran back and got the doctor. The doctor came out and then saw that I had a seizure and that acted as proof.

I got referred to the hospital and stayed for five nights. They identified that I had epilepsy at that point.

How did you feel when you were first diagnosed?

I didn’t know that I had epilepsy when I was first diagnosed because I was only a child at that time.

I didn’t know how it would impact my life moving forward. When I was 16, I started to think about the effect that it would have on me such as having a seizure now would result in me forgetting things.

What has been the biggest challenge you have faced since being diagnosed with epilepsy?

The biggest challenge is trying to get my epilepsy under control and being able to move on in life.

It can impact memory and make it much more difficult to memorise and do specific things.

People don’t seem to interpret it as being a disability.

One of the complications that I’m facing is trying to enter the Paralympics, you must have an IQ of 75 or below and need to be classed as having had an intellectual disability.

The problem that I’m facing now because of my epilepsy is that when I go to get an IQ assessment, it comes out saying I am 79.

Still, the actual system hasn’t considered specific factors that relate to my needs in terms of my epilepsy. And to then the rest of the consideration must be given by psychologists taking it down to 75.

What would you say to others who have been recently diagnosed with epilepsy?

What I would say to others recently diagnosed with epilepsy, would be depending on their age, if they were a child, I would say to parents to not give up.

Don’t just accept things. Monitor how often they have a seizure and monitor their behaviour.

Then make sure you get an ongoing appointment with a neurologist at a hospital every one or three months.

Check in with them and try to get more appointments, if you need more, because of the number of seizures.

Understand that there is a level of physicality that’s required within a body and sports can help support children and adults.

I do Karate which helps my health and keeps me proactive. Yet many parents don’t realise how important sports are to a child and support their health.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.