Changing the epilepsy story—one research breakthrough at a time
As you may know, one in 100 people in the UK live with epilepsy, yet research into the condition remains critically underfunded. I’m Sophie — I’m one of the one in 100 and this is my story.
Facing fear
I was diagnosed with epilepsy at age 11 and from that moment onwards, much of my childhood and school life was shaped by the condition. I wanted to be a normal kid so badly, but it wasn’t always possible.
An epilepsy diagnosis is life-changing. Suddenly you’re faced with uncertainty, anxiety and fear. For many —myself included— the journey involves navigating complex emotions, adapting daily life and, sometimes, a long search for the right treatment option.
Finding hope
Like many others, I just wanted my epilepsy to go away. I wanted answers on how to make it stop. I was willing to try anything.
For me, hope came in the form of research. At the age of 15, I took part in a groundbreaking project by Dr Antonio Valentin, which changed my life. Prior to this, I’d been given some bad odds. Multiple surgeons had advised me that due to the location of brain tissue that would need to be removed and the invasive nature of the surgery, there was a high likelihood I could be left paralysed on the right-hand side of my body.
Funded by the Epilepsy Research Institute, Dr Valentin’s transformative work focused on electrical cortical stimulation — a technique used to pinpoint the areas of the brain responsible for seizures.
“Thanks to this research, I was able to undergo successful brain surgery, with minimal side effects. I had my last seizure the morning of the surgery and have since been seizure-free for 10 years.”
However, for many others, their story doesn’t have the same ending. Due to a lack of investment, effective treatments remain out of reach, and far too many people continue to live with the uncertainty and fear that epilepsy brings.
With more funding, we can accelerate research, develop better treatments and change more lives — just like mine.
Will you help change the epilepsy story?
As part of their One in 100 campaign, the Epilepsy Research Institute is asking for your support.
Please consider making a donation today and together, we can deliver the next research breakthroughs for the one in 100 living with epilepsy.