My Story: epilepsy

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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.

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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...

When exactly is an appropriate time to tell people that you are gay? Why is it necessary? When is it a good time to tell them about your epilepsy? Is it any of their business?

Neither are...

I was diagnosed with juvenile myoclonic epilepsy (JME) when I was about 20 years old. Since then, I have been prescribed several anti-epilepsy drugs to help control my seizures. The first drug I...

Just like anyone else during these challenging times, I’ve been worried about getting the dreaded coronavirus.

Although epilepsy hasn’t been officially classed as making people more ‘at...

Fraizer is 7 and was diagnosed with epilepsy in September this year. He has focal onset epilepsy with focal to bilateral tonic clonic seizures. “He had his first seizure in May and it absolutely...

Harry was diagnosed with epilepsy in 2018, when he was 17. “I have focal seizures where my arm and hand locks up and is unable to move. I'm still conscious but unable to speak or anything. This...

Hello everyone. My name is Christina Marshall and I have complex partial seizures. I have 3 different types of seizures and I also have seizures in the night as well. Living with epilepsy for me has...
London

Aislinn Carlile volunteers for Epilepsy Action Northern Ireland’s Ballynahinch coffee and chat group. Located in a rural area, the group gives people affected by epilepsy a much-needed opportunity...

The Norwich Epilepsy Action coffee and chat group has shown an outstanding commitment to the cause of epilepsy. They have been a vital source of support for people living with the condition, their...

Norwich

Maureen Taylor and David Streets have been key in the development of the Sheffield Branch of Epilepsy Action, which was initially set up in 1989. It is now one of the most consistently best...

Sheffield

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