Woman appeals for more support for young people with epilepsy

Ciara had a great deal of support from her family and friends when she was diagnosed with epilepsy.

Ciara had a great deal of support from her family and friends when she was diagnosed with epilepsy. - Credit: Archant

A Weston woman is keen to raise awareness of epilepsy after she was diagnosed with the condition on the night of her prom.

Ciara Smyth had been having seizures since the age of 10, but she was unaware she had epilepsy until she suffered a severe fit six years later.

Epilepsy is difficult to diagnose, as there are so many different types of seizure.

But Ciara, who is now 23, wants to raise awareness of the condition to enable people to get the support they need.

She said: “I had my first major seizure on my school prom night – it was 10 minutes after I got home.

“I got home and woke my parents up by hitting the radiator, and they found me unconscious.

“After I was diagnosed, I found out I had been having seizures since about the age of 10. They were like jerks as you’re falling asleep at night.

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“There needs to be more awareness about epilepsy because I didn’t even know I was having seizures for six years.”

Ciara spoke out about her condition to mark Purple Day, on Tuesday – a global epilepsy awareness day.

To mark the day, Epilepsy Action is highlighting the need for more support for children and young adults with the condition.

They are four times more likely to suffer from mental health problems including anxiety, depression and suicidal thoughts.

However, a report published by the Royal College of Paediatrics and Child Health shows 90 per cent of health boards and trusts do not offer any mental health support within epilepsy clinics.

Epilepsy Action runs support services including a phone and email helpline.

Ciara said: “There are definitely things it stopped me from doing.

“I couldn’t drive when I was 17.

“I was meant to start a university course in midwifery, which I wasn’t able to do.

“I’m photosensitive, which is what people usually associate with epilepsy, but only about three per cent of people with epilepsy are.

“Being ill is quite a big trigger for me. I also have to be quite careful with stress and tiredness.

“I think having someone my age to talk to, like a support group or Facebook page, would have been helpful when I was younger.

“I was lucky to have very supportive family and friends.”

Ciara is now a student support worker for Young Epilepsy at their college in Surrey, where she helps pupils with the condition and the learning difficulties associated with it.