We fight to improve the lives
of everyone affected by epilepsy

Sammy Rose

I cannot really remember a time when I didn't have epilepsy. I started having seizures when I was 5, partial seizures which were pretty unpredictable. But it was part of my 'normal'. I did everything that a young boy would do, including going on school trips and completing my Duke of Edinburgh silver award. 

I had seizures every night and when I woke up or if I was very tired. My seizures were mainly connected to sleep, and excess stress also seemed to exacerbate them. I took a wide variety of medicines over the years and was seizure-free for nearly two years. I started to come off my medications but my seizures started again. 

When I turned 18 my scans revealed I had Focal Cortical Dysplasia. We tried different medications but my epilepsy was drug resistant. I was having seizures every night and most mornings when I woke up. 

This is when my epilepsy impacted most on my life. In my second year at university it seemed to spiral out of control. I had extreme fatigue and missed early lectures as my nights were very disturbed by my seizures. I decided to take a break from university to try and get my epilepsy under control. But I had two tonic-clonic seizures and ended up in hospital for a week both times. I lost my driving licence, my independence and my confidence in some ways. My life was pretty much on hold and my epilepsy was not getting any better. 

Last year, I started to explore the idea of surgery with Mr Andrew McEvoy, my consultant neurosurgeon at the National Hospital in London. After a lot of careful consideration and research I decided to go ahead. In January, I had an awake craniotomy to remove the FCD. It was a very long surgery and I spent two weeks in hospital. So far, I have been seizure free - for the first time I can remember.

Sammy Rose
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