I didn’t develop epilepsy until I was 21. It was a diagnosis I didn’t take well. At the time, I was living in London, enjoying nights out and the freedom of being young. Being told to be careful when socialising was not what I wanted to hear.
Back in 2004, treatment options weren’t as broad as they are today. Finding the right anti-epileptic drug was a long, difficult process. Some medications made me feel worse, and others had no impact at all. Eventually, my consultant suggested I try a relatively new drug at the time: levetiracetam. To my relief, it worked. I’ve never had a seizure since.
I also learned to manage my triggers, particularly sleep deprivation, and eventually got back to living what felt like a normal life. However, everything changed when I got married and started thinking about having a family.
Suddenly, my epilepsy was no longer just about me. Because levetiracetam was still a fairly new drug, very little was known about its safety during pregnancy. The alternative medications recommended for women were the same ones I had tried years earlier – and they had either worsened my condition or failed to work at all.
I was desperate. I even begged my consultant to wean me off the tablets, believing I could manage without them during pregnancy if I just rested enough. They explained how dangerous that would be, for both me and my baby. At the time, I didn’t want to hear it.
Then, a few weeks later, my consultant reached out with some incredible news: there was a research project being carried out at the Royal Victoria Infirmary in Newcastle, looking specifically at the effects of levetiracetam on pregnancy and babies. I didn’t hesitate for a second before agreeing to take part.
Throughout my pregnancy, I was closely monitored: regular scans, blood tests, and careful observation. Thanks to this research, I was able to safely give birth to my son, Jack, naturally. After he was born, the placenta was studied, and because of that vital research, doctors now have the knowledge they need to safely support other women taking levetiracetam during pregnancy.
Two years later, I was able to give birth to my daughter – something that might not have been possible without the work of Epilepsy Research Institute and their commitment to funding life-changing studies.
I will forever be grateful for this. Without research, my story could have been very different.
