Evie is 25 years old and has lived in France most of her life. After being diagnosed with epilepsy at the age of nine, and later, PNES (Psychogenic non-epileptic seizures), Evie hopes to spread awareness about invisible disabilities through her YouTube channel. Here, Evie shares more about her story and experiences of living with epilepsy.
I’m a young artist and model who grew up in France, so my entire medical experience has been through the French system. I was first diagnosed with epilepsy in 2008 at the age of nine when I was experiencing focal seizures (also known as absence seizures and previously petit mal, meaning little illness in French).Focal seizures involve a brief loss of awareness, which can be accompanied by blinking or mouth twitching, and take the form of a staring spell: the person suddenly seems to be absent. My eyes would roll back and my neck and face would twitch without me realising.I was initially prescribed with Depakine, but I had to stop taking it around the age of sixteen because of the risks associated with the use of sodium valproate in women and girls of childbearing age. I was therefore prescribed Lamical for a few years. My seizures slowly but surely started appearing again and getting worse, changing from absences to tonic-clonic seizures. I found it very challenging when they returned, especially in a form that I hadn’t previously known them to be. In the French equivalent of high school, everybody knew me as the epileptic girl. Despite this, I knew how to deal with my seizures, and I was always well taken care of. Once I started university and moved away from home to Paris, I was not only alone, but after about a year my seizures had reached their peak and started to resemble what they continue to be today. For a long time, I had no idea about any kind of resources, and I was in denial - I just wanted to live like everybody else. I would go into a room if I started feeling dizzy, have my seizure alone and then come out and pretend like nothing had happened. This not only put me in danger, I was also completely ignoring that part of my life, as I didn’t know how to speak about it.In addition, I was suffering from the side effects of Lamical so I decided to refer to my consultant. In 2020 I was hospitalised for a 48hour EEG where I was also diagnosed with PNES (Psychogenic non-epileptic seizures). These seizures can look and feel the same as epileptic seizures, but people with PNES are not experiencing the same electrical overload in their brains. For this reason, traditional epilepsy treatments, such as anti-seizure medications, don’t work and can even have harmful side effects. 
Current research suggests that psychogenic non-epileptic seizures can be triggered by post-traumatic stress disorder (PTSD) or other abnormally high levels of stress. However, the exact mechanism that leads to this type of seizure is unknown.Today, I am currently recognised as disabled as I also have other disabilities and I’m taking Topiramate for my Epilepsy. For the past year, I have been unable to work or continue my studies as my seizures are still not under control. I am therefore passionate about advocating for epilepsy research and spreading awareness of the condition, through my YouTube channel.I think more research into epilepsy is important because it is such a complex condition. Even between male and females, medication does not react in the same way. I hope and wish for more stable medication to become available for all genders, with minimal side-effects. I also hope for more treatment options that take away the seizures without leaving you with debilitating side effects.Thank you for reading my story, I believe everyone touched by any disability is so brave and I send my love and admiration to you all. To get to know me more, you can find me on YouTube: sltclavivi and Instagram: @sltclavivi.
Source: https://epilepsy-institute.org.uk/eri/about-epilepsy/your-stories/life-with-epilepsy-evies-story/
