My Story: epilepsy

Add your own

Everyone’s epilepsy story is unique, and sharing your story helps others know they are not alone.

These are inspiring stories; of being diagnosed, over-coming challenges, fundraising and much, much more. Please share your story too.

Most recent | Most read

Starting uni was a daunting experience. Moving out, studying something I’d never studied before, not knowing anyone, and having full independence – it was scary and tough to navigate. My parents...

I was diagnosed with epilepsy in my first year of uni.

In 2016, I began having seizures as a result of encephalitis. I kept having weird turns and passing out, which I just put down to...

I was diagnosed with epilepsy in my first year of uni.

In 2016, I began having seizures as a result of encephalitis. I kept having weird turns and passing out, which I just put down to...

...

Beth, 27, had her first seizure aged 13. She fell unconscious for 15 minutes and lost all movement down her left side.

"I couldn't talk, I couldn't walk, I couldn't move the left side of my...

I was first diagnosed when I was 14 years old. It was a typical family Christmas and we were celebrating. All I can remember is the dog barking and sniffing around me, and then I was having a...

I was diagnosed with Juvenile Myoclonic Epilepsy when I was 12. I remember feeling underwhelmed; I didn't really fully grasp how it might impact my future life. When I was transferred to adult...

“I have idiopathic generalized seizures, but they are brilliantly controlled now. If a seizure occurs, it’s due to excess alcohol, anxiety or stress. I am also very lucky that my seizures happen...

Ariish Wol @arrriish / https://www.instagram.com/arrriish/ has been modelling for just over 2 years. She was born in South Sudan and grew up in...

Eva-Lilly is 9 and had two focal seizures in August last year. One affected her mouth and the other affected one side of her face. She had an MRI but there were no immediate concerns. There were...

“I wish my family and loved ones didn’t have to see me have seizures as it’s very scary for them. I’m then having to ask them what happened because I can’t remember. It’s not a nice...

“I used to be scared of the seizures, but my worst fear now is the side effects of the meds and condition.”

“I wish people could see what else happens to me outside of the 20 seconds to 2...

My one wish is for people to realise that even with epilepsy you still have the potential to be a "healthy" human and with the right mindset you can achieve anything. I feel having...

I wanted to write about my experiences of epilepsy and pregnancy to challenge the misconception that women with epilepsy should not or cannot have healthy children or look after them. ...

I had my first seizure at the age of 9 months and was diagnosed at 18 months of age.

It affected my life in every aspect from very early on. I was so poorly that I couldn't go to nursery or...

“Theo started to have what we could only describe at the time as ‘funny turns’. He would often describe a tingling sensation in his teeth, before losing control of his speech and muscle movements...

"About a year ago my life changed completely. Unfortunately, after 13 years seizure free, I had to deal with the return of my epilepsy. For whatever reason. Easter time last year, I’d had a few...

I lost my beautiful daughter Isabella aged just 16 in June 2018 to SUDEP (Sudden Unexpected Death in Epilepsy).

It all started when Bella was around 7 years old. She kept falling over, then...

I’m currently in my first year of an integrative counselling and psychotherapy diploma. Unfortunately this has been online due to the pandemic. I’m no stranger to working online as I did my MSc...

I was diagnosed with epilepsy 25 years ago at the age of 13, after having my first tonic clonic seizure in a maths lesson at school

Epilepsy has impacted my life in many ways, from drug...

Ellen Oxley has smashed the 50 Miles in February Facebook challenge – completing 50 miles in just 16 days and raising over £1000 in the process for Epilepsy Action. Her son Ryan died from...

Pages