Please tell us about the ‘Seize Your Adventure’ podcast – why did you start it and what are your main goals for the project?
When I returned from walking the Camino de Santiago in 2017, I wrote about the experience in several places, including the Epilepsy Research UK website. After sharing my story, I didn’t expect people with epilepsy to contact me saying they were surprised or impressed that I could have done the walk with an epilepsy diagnosis.
I thought there needed to be more stories like mine out there, so I began tracking down people with epilepsy who were into adventure sports and challenges and I created the ‘Seizure Your Adventure’ website. However, what I really love is actually speaking to people about their own adventures, so it became a podcast in late 2018. I want to share as many stories as possible and show that there are people with epilepsy out there living their lives, even if you don’t see us having seizures.
What would you say to anyone newly diagnosed, or their family, as a result of your experience of the condition?
I always say to stop and assess where you are now. Your life has changed, and you are someone with epilepsy now. But that doesn’t mean you can’t do exciting things with your life or achieve your goals. Figure out where you want to be and take it one step at a time to get there. And diagnosis is the first step.
Do you have a message for researchers working in the epilepsy field?
I think it would be to remember that seizure-free is not epilepsy-free. It’s important to remember the physiological and the psychological effects of having epilepsy beyond the seizures, and I’m always interested when I see new research on this side of things.
What are your hopes for the future regarding epilepsy research or general awareness and understanding of the condition?
I’d love to see and understand more research ‘in-situ’ as it were. Many people with idiopathic epilepsy (forms of the condition with an underlying genetic basis) like mine have no real idea of how general life might be affecting our seizures. I’d be really interested to see how things like exercise, high-altitude, being a new parent, taking exams and stress at work affect the brain. Of course, I know that is difficult outside of a lab setting, but it would be so helpful to people living with the disease.
– Francesca, February 2021
You can find out more about Francesca’s ‘Seize Your Adventure’ podcast here.