A survey released today reveals that having the right information is the key to how well young people with epilepsy cope with their condition. The survey, by UK charity Epilepsy Action, is believed to be the largest survey of young people with epilepsy ever carried out.
The results demonstrate that those young people who feel most informed about their condition feel more positive about how their epilepsy affects them. This is compared to those who do not feel well-informed about their epilepsy.
Of the 265 12-20 year olds surveyed, those who feel well-informed are more likely to be able to discuss their epilepsy with their doctor. They are also more likely to understand why they have to take their medication. They feel better supported at school and feel their epilepsy has less of an impact on their school work. They are more likely to feel comfortable being open about their epilepsy and less likely to feel excluded because of it.
Rosie Gilmour, who is 16 and from Dunblane, has had epilepsy since she was nine years-old. Rosie says: “My epilepsy did affect me when I was growing up and for a time, I wasn’t allowed to go anywhere on my own. But now I am more independent and I have a great network of friends and a supportive family, who all understand my epilepsy. I have just been signed up to a modelling agency and hope to go on and have a fantastic career.
“I work really hard to make sure my epilepsy does not hold me back in life. I hope that by supporting Epilepsy Action’s campaign, I can inspire others to do the same.”
Aimee Gee, campaigns manager at Epilepsy Action, said: “It’s great to see that lots of young people with epilepsy feel they are getting the support they need, but more can be done. There is no reason why young people with epilepsy can’t do many of the same things as their friends, providing they are well-informed about how to handle their condition. It is also vital that young people with epilepsy receive support at school or college to enable them to reach their full potential.”
There are currently around 40,000 young people aged 12-20 with epilepsy in the UK. On average, there will be three or four young people with epilepsy in every secondary school.
Epilepsy Action is using National Epilepsy Week (13-19 June) as an opportunity to re-launch its ‘Upfront’ information booklet for young people with epilepsy. The booklet discusses several issues affecting young people with epilepsy. These include socialising, education, careers, driving, alcohol, drugs and contraception. The charity also provides a young people’s website, a text and email helpline and online agony aunts.
To download a free copy of ‘Upfront’ or for more information about the campaign, visit www.epilepsy.org.uk/nationalepilepsyweek