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Emilia Potts’s Story

May 21st to May 26th 2026

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Emilia Potts smiling portrait photo sharing her personal 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. I also kept waking up on the floor, something I never did, which was odd. This was a result of a seizure in the night and I rolled out of bed, again we didn’t suspect anything.

When I finally got diagnosed back in 2016 I experienced the most difficult 2 years of my life that have left a lasting impact. I was tackling GCSEs and seizures, I would have one with no warning, wake up, fall back asleep, throw up and feel dreadful for hours.

In 2019 I experienced my first seizure free year. And, touch wood, since then I’ve been ok. I still experience myclonic jerks which is what the ‘M’ stands for in my diagnosis. These jerks are mini seizures that may cause my leg to jerk and usually happen when I’m relaxed or on my period.

My diagnosis led to problems with my mental health which I still struggle with today. Sometimes I get bad anxiety about anything and paranoid and I’m hoping my story will help people, particularly children, who get diagnosed, that you can still be a child and enjoy life with epilepsy. It’s very important that children prioritise their mental health as well as their diagnosis.

Thank you for reading my story.

Emilia Potts

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