An OFs challenges with Epilepsy which started while at the College

My journey with seizures began when I was still finding my way at Framlingham, at the age of 14, so a recent trip to the college brought back some strong memories, from seizures in the shower, splitting my chin open on my desk in Moreau House, and the reliance on friends and teachers to find me in dangerous situations.

Since leaving Framlingham I have been supported by the Epilepsy Society for many years and when they were developing the ‘Safe Mum Safe Baby’ campaign it truly struck a chord with me and where I was in my life.

I spoke to the team in early 2021 and realised there was more than just a catchy title and plenty of work to be done on the campaign. Nicola and Nathan from the Epilepsy Society invited me to join various online events, due to Covid-19’s influence; such as a Baby Shower Roundtable and even a local TV news slot to explain why the campaign was so important to my relationship and possible future family.

I have met such a variety of people during this campaign, from scientists, politicians, medical professionals, others seeking answers, and even those who have sadly lost relatives to epilepsy and are demanding a brighter future for others.

Our journey with anti- seizure medications and pregnancy has been a real rollercoaster and not something I could ever have prepared myself for physically or mentally. It is why the campaign has grown in significance to me over the years. The heartbreak of multiple miscarriages combined with the fear of what damage could be done unnecessarily to any unborn child, when there is the science and research available to produce safer treatments for women living with epilepsy, is simply cruel.

In January 2024 I was invited to speak, as the patient advocate, at the launch event of ‘What is the Lifetime Cost of a Disability? Individual, Health System, and Societal Impacts of Anti- Seizure Medicine Use During Pregnancy’; at the Houses of Parliament. I jumped at the opportunity as I do not want anyone else to go through what we have gone through if government funding could make the difference. £20m could stop babies being born with preventable disabilities. https://epilepsysociety.org.uk/news/lifetime-cost-of-a-disability

If you have the time, my speech is available to listen to, and give a glimpse into the life of just one woman living with epilepsy and the choices faced when deciding on starting a family. (Please allow for the speaker issues early on, the clarity improves)

https://drive.google.com/file/d/1EphpHqHjEpnmCQZWEpF9BbjMwCPFpyqZ/view?usp=drivesdk

I will say that epilepsy is not a reason not to have a beautiful family and not to be a wonderful mother or father. You just need the right support and you deserve it!