To mark National Epilepsy Week (May 14th – 20th) which begins today, Epilepsy Ireland has announced results of a survey conducted among young people aged 16-21 on their experience of living with the condition.
The results showed that:
- 65% of respondents have concerns about lifestyle issues such as drinking alcohol, socialising, sport and travel
- 56% were worried about employment
- 64% said they were concerned about anxiety issues
- 56% have confidence and self-esteem worries
- When asked what two words best sum up your epilepsy, "angry" and "annoyed" were the most common words
- 71% felt that they are able to explain their epilepsy to others
Speaking in advance of National Epilepsy Week, Peter Murphy, CEO of Epilepsy Ireland said: "The results of our survey shed new light on the experiences of the condition among young people. The teenage years can be a difficult time with exams, social pressures and transitioning into adulthood. With an epilepsy diagnosis on top of all that, you can feel like you're on an emotional rollercoaster. The survey has shown that young people often feel like the condition is a heavy burden, resulting in feelings of anger and frustration. If anyone is feeling like this, it is important you find someone to talk to whether it's friends or family or engaging with the services of Epilepsy Ireland or your healthcare team."
He adds: "Epilepsy Ireland also offers a range of services which include one to one services, a dedicated Transitional Nurse helpline (01 4554133) and our new How2Tell app which addresses the major concern of disclosing epilepsy. We also offer our pre-employment training course Training For Success. Based on campus at the Institute of Technology Sligo, the programme has helped over 250 young people with epilepsy attend since its inception in 1998. Additionally, Epilepsy Ireland also offers support groups or self-management programmes such as the STEPS programme to help teens and young people talk about the difficulties they experience."
Meanwhile, Epilepsy Ireland has released a new booklet to mark National Epilepsy Week entitled– 'Moving Forward', a guide for young people with the condition. It addresses the key challenges for young people with epilepsy identified in the survey as well as for their parents and aims to support teenagers as they make the often difficult move from paediatric to adult care.
Author and Epilepsy Transition Coordinator with the National Children's Hospital Group and Epilepsy Ireland, Yvonne Owen said: "In the development of this book we have worked with many young people with epilepsy and their parents who have provided great insight about what it's like to live with epilepsy and the challenges they have to face. They have helped us to identify what young people want to know about at this stage of their lives and with their help we have developed this new resource. The booklet has information about transition and moving to adult services. There is also a section on top tips for living with epilepsy and a section for parents too. Additionally, there are lots of links to further resources included so you can find out even more information about the condition."
Please note the Epilepsy Transitional Nurse Helpline Project with Yvonne Oven finished on May 20th 2019