Epilepsy Stories

Real epilepsy stories, shared by real people

Below are the epilepsy stories very kindly submitted to our website and our social media pages by people living with the condition and the families and friends caring for them.

Have your own epilepsy stories to share?

Epilepsy is the fourth most common, serious neurological condition in the world but it impacts each person’s life in a unique and individual way. By sharing your story, you are helping our mission of supporting epilepsy awareness!

 Scroll below to submit a post. We will add your epilepsy story on our website and you might be featured on our social media pages as well!

Cassidy Megan founder of Purple Day - read her story

A Mother’s Love: Fighting for Isabella’s Future

Hello, my name is Johana, mom of Lia Isabella Mantilla and today I want to share our story with you. Isabella was born on 07/05/2021, my pregnancy was very normal and calm, she was born at 39.5 weeks. It all started fifteen days after her birth when she began to make strange movements in her body, folding her hands and feet in the

Dear Anze

What to say? How to describe​ you Anze? I had the ​privilege of being your mum for 10890 days. I am and will forever be grateful for having such a pure soul in my life. I learned so much from you Anze: what I should improve, what is best to let go, how to surrender and embrace whatever is coming my way. Already when you were

Emilia Potts

Emilia Potts' epilepsy story My life was changed when I turned 13 years old. I got diagnosed with JME, a type of epilepsy. We hadn’t noticed the early signs, but looking back now I see them clearly. I experienced something called an ‘absent seizure’ which is where I would zone out, almost like falling asleep, but it could happen mid conversation, at anytime.

Twins with Epilepsy

Hi. Claire & Jane here. We are 32 years old and we share an unbreakable bond since birth, not only are we identical twins but we share the same condition. It took 20 years for us to be diagnosed with epilepsy. It’s been a long road to get to where we are today. Our diagnosis is frontal lobe nocturnal epilepsy which means we

Jo’s Story

At birth I had west syndrome and that lasted about 2 years. Because I had strokes, I had to teach myself through using heavy boots how to walk as all I could do before is crawl. My epilepsy when controlled I lived somewhat a normal life till I turned 13, I had the HPV vaccine at school which triggered my epilepsy. Had my

Allie’s Story

I have drug resistant focal impaired. I was diagnosed when I was around 14, I am turning 20 soon and it still isn’t figured out. I have had an unsuccessful lobectomy and two SEEG’s. Allie's Story: My lobectomy. I had a piece of my left temporal lobe removed in Jan/Feb of 2022. It unfortunately did not work. But, my

Caleb Mcarthy Story

Caleb is an eight year old boy who suffers with so many seizures each day that doctors have said he is at high risk of SUDEP, his parents made a plea to help to prolong his life. He was a perfectly normal little boy living a very normal life until he began having seizures overnight on August 2,2019. Caleb

Harry Brocklehurst Story

Harry Brocklehurst's Story Harry was 11 months old and has always slept amazing, one evening he kept waking up being upset, I went into his room in the middle of the night and he was having a seizure, we called 999 who did not sent an ambulance, we took him straight to a&e who were incredible, and admitted us to be monitored, over

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    Few people are actually willing to step up and talk about Epilepsy. We need to make the world aware of the impact Epilepsy has on so many and find a cure. Without a cure, there are far too many people who will never have relief from seizures.

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