Champion Profile
FAYE
I was diagnosed with epilepsy at the age of seven. In terms of awareness, things were very different then to how they are now. I was fortunate to be cared for by my parents and other adults around me, who tried to ensure my life continued as normally as possible.
My condition was fairly well controlled throughout the years, then in October 2014 I found out I was pregnant. This brought to an end almost two years of seizure freedom. Noah arrived safely in June 2015 and made my life complete, but my difficult pregnancy had changed everything.
I started my blog when I realised how little information there was for pregnant women with epilepsy. I started by covering topics like the impact of epilepsy and anti-seizure medications (ASMs) on my pregnancy and motherhood, as well as my attempt at juggling everyday life with epilepsy. The blog soon grew beyond anything I could imagine – so much so that I have spent much of recent years advocating for women with epilepsy and not actually writing!
I have been a child with epilepsy and a young adult at university managing my epilepsy alone for the first time. I have travelled the world, and I have been a woman, a pregnant woman and now a mum with epilepsy. It has given me a unique insight into life with this condition. I always say I am no expert, but I can draw on my own experiences. More than ever in recent years, the need to advocate for women with epilepsy has been at the forefront of my mind.
Epilepsy has knocked me down in so many ways. I can remember being that seven-year-old and knowing I was different to my friends. I understand the challenges facing young people, like balancing wanting to socialise versus the need to sleep and keep yourself well. Then having serious seizures as an adult and being hospitalised in pregnancy, and again while raising a baby and toddler. Dealing with the sleep deprivation, managing the anxiety of never knowing when you could have a seizure.
Having started taking sodium valproate again in March 2024, my epilepsy is now better controlled. However, I still see the vital need to provide women with support that is lacking around the country – care should not be a postcode lottery!
Noah is now a happy and healthy nine-year-old, who has an ADHD and autism diagnosis. I am an advocate, speaker and most importantly a person living with epilepsy. Alongside the blog, I also run a support group for anyone who needs it. I will always be the voice for those who want to shout louder than they can on their own.
WHY FAYE'S SUPPORTING THE ONE IN 100
Research is hope. It’s as simple as that. Research is the key to a cure.
In an ideal world I hope we find a cure, a way to live seizure free. In the mid-term, I hope for a medication that doesn’t cause side effects because I have spent many years of my life balancing the risk of seizure against living with the side effects of the medication. They can also be so debilitating.
I am supporting the campaign because research is the key. I have seen the changes in epilepsy care in the last 30 years, but it has not been quick enough. I believe this is because research has been underfunded and overlooked, so I am very conscious that this needs to be a key priority for the government and long-term research investment must be made. The money spent on research could save thousands by treating people with epilepsy before the unexpected A&E visits or hospital stays. I support this campaign because I could not change things for little me, but I can change things for the next generation of women living with epilepsy. I support it for this generation of women wanting a family. I support it for my generation who want to know the effects of seizures and medication on their children. I support it for the child, teenager, woman and mother I was and am.
There's strength in numbers.
The One in 100 campaign is calling on the epilepsy community, funders, government, pharma and key stakeholders to unite in our mission to help us to be heard...