I was about thirteen when I started experiencing the symptoms that I now know to be associated with epilepsy, but I was only diagnosed recently. I would experience severe headaches alongside a strange smell. These episodes continued a few times a year, until I had my first convulsive seizure in 2020. It was then that I was first diagnosed with epilepsy.
Luckily, my epilepsy is now under control and I’m seizure-free as I’ve been responsive to medication. But not everybody is as fortunate as I am.
That’s why we urgently need more research into epilepsy so that we can understand the mechanisms behind the condition and find new treatments.
I have an interest in epilepsy research because I live with the condition but also because I have a background in research. I completed a PhD in tumour biology, which was sponsored by Cancer Research UK, and I have worked in academia as a research scientist for many years, mainly in cancer research. More recently, when I left academia, I worked for the National Cancer Research Institute (NCRI) and now work for the National Institute for Health and Care Research (NIHR) as Cancer Portfolio Lead.
Through my own experiences of working in cancer research, I’ve seen how important patient and public involvement is for ensuring the right research is done and that the patient perspective is considered. Being an Epilepsy Research Institute Shape Network member has involved taking part in different funding panels, as well as other exciting opportunities such as the priority setting partnership.
I’m also proud to be a trustee for the Epilepsy Research Institute. The formation of the Institute is significant for the epilepsy research space, as there’s so much to be uncovered about the condition and that can only happen through collaboration. Collaborations between scientists and clinicians and people affected by epilepsy, but also between funders. Everybody working together will enable us to find treatments more easily and faster.
An important part of collaborative working is capacity building, which I feel passionately about in research. It’s great to see that it is a focus of the Institute’s research programme and is one of their six research themes.
Capacity building means not only encouraging the next generation of researchers into the field but also retaining them, as this can often be difficult. The other element of capacity building is helping to build momentum by collaborating with researchers from different fields, whose expertise can be utilised in epilepsy research. For example, there may be techniques and knowledge in the cancer research field that could be applicable in epilepsy research.
If multiple disciplines work together, we can advance the field much more quickly.
There are so many exciting possibilities in epilepsy research where we can really begin to understand the basic biology of epilepsy. I hope we can use this to find more treatment options so that we can help people live well with epilepsy.
