Hello everyone my name is Rosie and I have been living with epilepsy for 17 years. I was eight years old when I was first diagnosed with the condition and that was the start of my journey. I remember when my mum told me about my diagnosis and I cried, as this is something I had never heard of before and did not know what this would mean for me going forward. After numerous doctors appointments, MRI scans and blood tests I was put on my first medication. During this time I was still having seizures, my doctor had told my mum and I that I had photosensitive epilepsy which meant strobe lighting was the main cause of my seizures. What I thought of strobe lighting at the time was disco lights in a club or flashing lights in a movie, however I soon found out that something as simple as driving through a tunnel or the sun flickering through palm trees could bring on a seizure.
I do believe I'm one of the lucky ones as I get a ‘warning’, before I have a seizure which I can only explain as a little flickering light at the front of my left eye, this is when I could warn whoever I was with at the time that I was going to have a seizure. Having a good support system around is very important for me, as I felt safe and comfortable with the people that are around me when I was having my seizures.
This condition can be scary and limiting at times but I wanted to make sure that I could still achieve the goals I had set for myself and would not let my condition deter me from getting to the milestones in life like everyone else. I had always wanted to pass my A levels and go to University to study journalism and one of the top universities for journalism was Lincoln, which was four hours away from home. I was apprehensive and nervous at first to be leaving home and living so far away from everyone I knew. By this time I had been seizure free for six years and was confident that the medication I was taking was working for me. Moving away from home made me become more independent and self aware of what types of situations I would be able to put myself in, it definitely gave me more confidence to speak about my condition with people that have not experienced something like this before.
I am now 25 years old and have not suffered from a seizure since the age of 12. Life continues for me and I have got over some hurdles that at one point, I did not think I would be able to due to my condition. I would say the next step in my epilepsy journey would be planning for children, as my medication is quite strong my doctor said I would need to come off the medication before trying for children. This is something quite daunting to think about in terms of my health and the health of my future children, however I believe like everything else there is to come with this condition I will take the right measures and proportions to do as best for me and will be able to live life to its fullest.
