I first heard about the Epilepsy Research UK SHAPE NETWORK on Facebook and signed up right away. I am excited to be a member as it offers a great opportunity for people living with epilepsy to have a direct impact on the types and quality of research that is carried out.

Research is central to improving the lives of people living with epilepsy now, and for those who will either develop or be born with the condition in the future. I have been involved in research in a number of ways over the past eight years. As someone living with epilepsy, I feel it’s a way of turning a negative into a positive – taking my years of lived knowledge and experience into forward motion. 

I also joined the SHAPE NETWORK Steering Group, along with nine other people affected by epilepsy, to discuss ideas on the development of the SHAPE NETWORK strategy. As a group, we have appropriately ‘shaped’ a set of clear ideas and goals of how Epilepsy Research UK can progress with genuine involvement of people with epilepsy. I am really excited to see this work in action in the coming months.

I hope the network can encourage and engage people to come forward to be involved in a range of research and advocacy opportunities. Patient involvement has the ability to make research relevant, focused and hopefully more successful in its aims. It also has the potential to give people with epilepsy a sense of real purpose, to raise self-esteem and perhaps even help develop additional skills.

Living with epilepsy gives you the insight of walking in the epilepsy shoes every day. So, you know where they are tight, where they rub and how you want to cast them off. You also have the first-hand individual experience of medication side effects. Both these things give you the knowledge and coping strategies that can inform and shape research. You’re an expert in your own epilepsy and your voice should be included in shaping research directions and decisions. 

Thank you

Rebecca

Find out more about the SHAPE NETWORK here

Epilepsy interrupts the lives of ordinary, extraordinary people, just like Rebecca. It’s invisible, it’s unpredictable, it’s frightening.

A life free from epilepsy is possible. But only through research.

Thank you for your continued support.