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#EpilepsyDay 2024 - Zanele's Story

Zanele and key message of Time, Safe, Stay

For #EpilepsyDay, we were sent this piece by Zanele Katomeni in which she reflects on her experience with epilepsy, and the difference between attitudes towards the condition in Zimbabwe and Ireland…

My epilepsy journey began at the age of 8. I was knocked over by a car, and as a result I had a clot in my brain.


As I waited to see a doctor, I had my first seizure. My mother told me how it was as if I was dropping from the bed I was in, and as if the floor below was a trampoline due to how the seizure had affected my body.

Doctors gave 24hrs to see if the clot would resolve and during this period, I was in a coma. Unfortunately, the clot did not resolve, and I was rushed to surgery.

Thankfully, the surgery was successful, but we were warned that epilepsy could result due to the scaring on my brain from where the clot was removed. From being my 8-year-old self, I returned to being a toddler and I had to learn how to walk and talk all over again.

While managing to do this and continuing to recover, it was a year later when I then experienced my second seizure. This was a horrible experience as attitudes to epilepsy are a lot different in Zimbabwe compared to Ireland. I suffered rejection, I was degraded and was told about all the things I wouldn’t be able to do – things that little girls can often think of such as getting married and having children. I was told that even if I did have children in the future, they would all have epilepsy too. I was told that I wouldn’t be able to or be allowed to work. Epilepsy back home is treated as an evil spirit, and when you heard that so much, it was hard not to believe it.

It was traumatic but throughout my years of living in Zimbabwe, I had a stubborn faith in myself that despite what I had been told, I would still do all the things that I was told I couldn’t.

When I came to Ireland, I left the trauma behind but made sure to bring the stubborn faith with me! l educated myself about epilepsy and l got to understand that it's just a condition that I live with but doesn’t define me.

I’ve had my wonderful children; I’m happily married – I’ve studied law and got myself a masters. It’s not been without its challenges – I’m been through the journey that many people with epilepsy can relate to – changing medications with differing results – but throughout it all, I’ve continued to tell myself that the condition will not stop me and that’s the message I’d like to share with others living with the condition.

I want to be an advocate and raise epilepsy awareness here in Ireland and in places like Zimbabwe – where attitudes are just so different to what I’ve experienced here. I do get emotional when l am talking about this but what l want other people with epilepsy to know is to not give up, there is always hope and you can do it!