Teen speaks out about epilepsy

Held annually, ‘Purple Day’ is the global awareness day for epilepsy, which falls on Mothering Sunday (March 26) this year.

A new survey has found that people with epilepsy in Northern Ireland are at serious risk of loneliness and on Purple Day people all over the world, including Northern Ireland, are uniting and turning their world purple to show it doesn’t have to be this way!

National charity Epilepsy Action surveyed more than 1,000 people to find out how their epilepsy affects their feelings and emotions. The survey found that six out of 10 people with epilepsy have experienced feelings of loneliness.

Respondents also experience high levels of stress, low mood and anxiety, even if they don’t currently have active seizures.

Over three quarters of people (77%) also said having epilepsy had a negative impact on their ability to take part in certain events or activities.

People who took part in the survey said their epilepsy has a significant impact on their self-esteem and identity. One respondent described their condition as making them feel ‘not part of the same human race as everybody else’. Another said ‘epilepsy is like having a storm cloud following you and never being certain when it will break’.

Claire McDowell, 18, from Ahogill, was first diagnosed with epilepsy when she aged just nine and has shared her story to highlight the challenges of living with the condition and how it has affected her.

Her first seizure happened in March 2009 when she came home from school. Her mum immediately knew something was wrong when she found her staring into her wardrobe and not responding.

Claire said that as well as having to come to terms with the physical impact of having frequent seizures, she has also had to come to terms with a lot as she grew up.

“When I started high school it became more nerve-wracking with getting the bus. In my first year I broke my leg after having a seizure and I had to have six weeks off, which really scared me. Thankfully my friends were all very understanding towards me and kept a close eye out for me.”

She said: “I’ve also had a lot of medication changes ever since I was first diagnosed with epilepsy. When I was going through the worst spell of seizures I felt so down and just kept wondering ‘Why me?’ I felt as though I was in a dark hole that I’d never get out of, but once they got my medication sorted I felt happier. I passed my driving test last November and on March 3 this year I celebrated two years of being seizure free. Everything has changed – I just had to have some faith and wait for things to work out.”