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Personal Experiences

I hope that sharing our stories will help make things better for people in the future, encouraging them to engage more with their doctors, to feel less alone and to ask for what they deserve: the best care.

Catherine, UK

Being an Epilepsy Advocate means I get the honourable task of turning back the page in the History-book of Epilepsy, and to contribute in writing the next chapter.

Monica, The Netherlands

Learning about how other people have coped with epilepsy and how they manage their lives can help to reassure you that epilepsy is not something that need hold you back.

The epilepsy advocate programme has been developed to enable you to hear directly from people with epilepsy or the carers of someone with epilepsy how best to live beyond epilepsy.

The epilepsy advocates are volunteers who want to share their experiences so that you get the most out of the care available to you and help you achieve your goals in life.

The aim of the advocate programme is to raise awareness of epilepsy, help dispel myths about epilepsy and encourage people living with this condition, and their carers, to take a more active role in the management of their epilepsy.

The advocates will provide you with support by:

  • Sharing their personal story as a carer, or person, living with epilepsy
  • Answering questions and addressing common fears
  • Empowering people living with epilepsy
  • Encouraging people to foster meaningful and constructive relationships with their doctor

Epilepsy advocates know what it's like to be affected by epilepsy and are happy to give up their time to support and empower others. They want you - like them - to live beyond epilepsy, to strive for the best possible treatment so that you can get on with your life.

Through listening to their experiences you will see that they have lived through many of the situations that you are currently facing and may have questions about, such as what questions to ask when you see the doctor, what are all the tests for, why does my doctor keep changing my medication, how to tell people about your epilepsy, and so on.

As choices of medication vary depending on your unique circumstances (age, type of epilepsy, other medications, life goals etc.) they will not be able to advise you on specific medications, but they are a great source of information and they are here to help you and to share their experiences of living well with epilepsy.