05 Jun 08

41 young people across the UK were interviewed about their experiences of living with epilepsy

Young people with epilepsy can read about, or listen to, other teenagers and young adults who have experienced living with the condition at Youthhealthtalk, part of the award-winning DIPEx patient website based on Oxford University research.

The site also gives health professionals an insight into what young people think and feel about particular health conditions.

The DIPEx research group has published personal experiences of illness for over 40 health conditions to date. Each section is based on academic research and includes interviews with people from a variety of ages, backgrounds and ethnic groups

Senior researcher Ulla Räisänen interviewed 41 young people across the UK about their experiences of living with epilepsy. The site includes 350 video, audio and written clips, supported by medical information on epilepsy and its effects.

‘The website gives voice to young people with epilepsy and presents their real experiences,’ says Ulla Räisänen. ‘People can use the website freely, when and where suits them best. Learning from others in a similar situation can bring so much hope and encouragement and above all, young people with epilepsy can see that they are not alone.’

There are 28 summaries on the site exploring young people’s experiences of diagnosis, symptoms, medication and side-effects. Interviewees speak of experiences of different seizures and tests, school, studies, work and unemployment, relationships, sex and contraception, lifestyle, feelings and emotions. They also give advice to other young people living with epilepsy.

‘I desperately didn’t want epilepsy, I didn’t want to stand out or be different,’ says Anna, 20. ‘But then I actually realized diagnosis was very helpful and made things a lot better. Giving it a name meant that I could get treatment, medication, and it was a positive thing rather than a negative thing.’

‘Epilepsy is different for each person. I think sometimes you can be put in a category if you’ve got that type of epilepsy then these are the trigger factors or whatever,’ adds Rebecca, 20. ‘But it’s different in each person and each person’s lifestyle is different.’

Youthhealthtalk is run by the DIPEx charity and has become one of the UK’s top health resources for young people, health professionals and those in training. The research on young people and epilepsy was funded by the Department of Health.

The DIPEx research group within the University of Oxford was set up by Dr Ann McPherson CBE, University Lecturer in General Practice, and Dr Andrew Herxheimer, after their own personal experiences of illness.

Experiences of over 40 health conditions have been published to date, including sexual health of young people, teenage cancer and young people with long-term health conditions. Each section is based on academic research and includes interviews with approximately 40-50 people from a variety of ages, backgrounds and ethnic groups.