Luzka’s Story

I was first diagnosed with JME (juvenile myoclonic epilepsy) when I was 28 years old. I am now 32, and have had about 9-10 seizures. Mostly due to alcohol and not taking medicine. I’m currently taking Keppra. When I had my first seizure, my parents were with me. My mom and dad didn’t understand what had happen, which caused my mom to place her finger in my mouth (she didn’t know at the time, that this was not a good idea) – I almost ripped my mom’s finger off, and stop breathing in my first seizure. I was taken too the emergency room. After being diagnosed, and my parents being taught what to do, I felt pretty helpless. I currently live alone and through the years, the feeling of being helpless has faded. I learned to understand my auras, and get myself to safety when I feel one is coming. I use to be scared of going out and for a long time this has affected my relationship with people, before being diagnosed I was very out spoken and outgoing. That changed when I was diagnosed- it was hard for me to accept it and therefore accept myself fully. The rode hasn’t been easy, but slowly I’ve been able to accept my epilepsy, to understand it, and to no longer be ashamed of it.

I want to be able to educate people on all kinds of epilepsy, to stop the judgement that comes with it. Epilepsy is a medical condition, that we may not fully understand but I’m hopeful that some day will find the cure and bring more awareness to the mental effect this has on family, friends and people who have it, such as myself. Like I mentioned, this had a huge impact on my mental health, personality. Through meditation, music and therapy as well as being more open with it, helped me over come my fear! I’ve been able to travel to other countries, go hiking and open up again with my friends and family. I’m able to live my life independently and with friends and no longer run away from my condition, but rather accept it and understand my triggers to avoid it. I hope that we find the cure, and stop the social pressure this condition puts on many other people. Understand your triggers and remember that even if we do have a condition it does not mean we can’t live life to the fullest! We still can, with responsibiliy but we can still smile and be hopeful for the future.