Francesca

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.

Francesca is an Epilepsy Research UK supporter and host of the ‘Seize Your Adventure’ podcast, which explores the whole spectrum of adventure through stories from people living with epilepsy.

How has your life been interrupted by epilepsy?

The main interruption for me was that I never learned how to drive, and a lot of that is down to my epilepsy. I took a few lessons at 18 but I wasn’t a confident driver. Then because I was having seizures, I kept being signed off from driving every time I considered taking lessons again. Not being able to drive limits my ability to do impromptu adventures or trips – I’m always relying on lifts of public transport. But if I could drive, I don’t know if I would have considered walking across Spain as a suitable form of transport!

Do you find that people with epilepsy are often under-estimated?

Yes, I do. Before I took on the Camino de Santiago – an almost 800km hike and one of Europe’s most popular pilgrim trails – many people were saying things like “you’re very brave” and some suggested they thought it was a reckless challenge for someone with epilepsy to take on.

Adventure sports always come with risks – the question is, is it a risk for yourself or a risk for others? As individuals, we can choose how much risk we want to take on. I have disclaimers in my shows to highlight that these are personal stories – not advice – and I would never advocate doing anything that puts anyone else at risk.

Can you bring us up to speed with what you’ve been doing since sharing your story with us 3 years ago?

A lot of my energy has gone into the podcast. It takes a lot of time to track down people who have stories about epilepsy and adventure, and then convince them to speak about their experiences. Most of them respond with ‘I don’t think I’m that interesting’, but the conversations are always so good!

Aside from the podcast, I’ve been able to do some smaller adventures over the past couple of years. I enjoyed some solo hiking in Scotland (I was travelling alone and the staff at the hostel were awesome when I told them about my epilepsy). I also went over to America to visit some friends in Colorado and hiked above 4000m for the first time. But the biggest challenge I’ve done since the Camino was an ultramarathon – 100km over a weekend in August last year. It was so hard but amazingly good fun!

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.

Photo taken by Conan Burke

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.

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