We fight to improve the lives
of everyone affected by epilepsy

Ryan

Ryan started having seizures as a young child, but went for five years without an official diagnosis of photosensitive epilepsy.

“It’s thought I developed my epilepsy as early as 7 but it wasn’t diagnosed until I was 12. I have a tonic clonic seizure every week and these can last up to two and half minutes. My myoclonic seizures can happen twice a week and last well over an hour. I can also have up to 40 absences a week as well as nightly auras.

My epilepsy has always been uncontrolled, I currently take Zonegran, Trileptal, Clobazam and Acetazolomide. Triggers for my seizures include lack of sleep, getting up too quickly in the morning, stress, heat, too much TV - although I have spontaneous seizures too.  My seizures are pretty violent and have led to multiple injuries. In the last 2 years I’ve broken my spine 3 separate times in 7 places. I’ve been put into various dangerous situations and had many accidents; crashing through a mirror, having the blades sticking out of my back, getting stuck behind the toilet door and battering my head. I’ve had a seizure in a taxi and got the seatbelt wrapped around my neck. Epilepsy has also toyed with my mental health.

My experience with epilepsy and the NHS hasn’t been great, especially during the early years. I wasn’t treated very well and although my neurologist is better now, getting an appointment on time is almost impossible.

I’ve still managed to get highers and a diploma in business, but I’d be lying if I said epilepsy hadn’t limited my life. Job opportunities are restricted and I can’t drive. The medications have contributed to the thinning of my bones, so I now have osteoporosis in my spine and osteopenia in my hip - not ideal when you have seizures.

Ryan is married and has a daughter. “My daughter Leighanna (12) has never shied away from my epilepsy or the complications it has brought - she is extremely supportive, resilient and positive. She has a wealth of knowledge for such a young girl. My wife is my rock, she cares for me, supporting me during every seizure. She remembers every detail, especially my medication and doctor’s appointments. She is the person I rely on the most and the strongest person I know. I am eternally grateful to them both for their love and support. They have managed to make me feel almost normal and like I can lead a normal life.”

Ryan
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