Life with Epilepsy

Hi, I’m Julia Kovacova. I love nature, rock climbing, photography, traveling, and cooking. I have a rare form of epilepsy (PVNH). This was caused by a genetic mutation in the FLNA gene.

I was diagnosed at 9 years old and am now 27 years old. I studied business at Wayne State University, and graduated during the COVID-19 pandemic. In the past year I’ve moved from my hometown in metro Detroit to the country I was born in, Slovakia. I had always wondered what living in Europe would be like and because I could no longer drive, it seemed like the right move. I moved abroad and feel like I can live more independently even with my condition. Since 2023 I have worked to help Ukrainian refugees and done a lot of travel. Photography is my language and I’m @frigidwinter and @kovacova on Instagram.

There are many challenges that come from being ill, especially if you ive with an illness that can sometimes be invisible. The types of seizures I have don’t make me look sick, only I know they are happening. So unfortunately sometimes people don’t actually believe I have epilepsy. I have had countless MRI’s, EEG’s, PET scans, CT’s and EMU’s (epilepsy monitoring unit). There was a week in the EMU when doctors took me off of medicine to figure out what part of my brain the seizures come from. This resulted in grand mal seizures, weeks of jaw pain, and traumatic flashbacks. Two years later, trying to find out more information, I drank strong coffee to keep me up most of the night and flashing lights to trigger more seizures. Now on three medications, my epilepsy is hard to put under total control, and there is no cure. I can only hope advances in medicine will help.

Even though I’ve had support from family and friends, I still feel isolated with my condition. I don’t know anyone else who has epilepsy, and it's difficult to find a community that can relate. However, being abroad is teaching me how to live on my own, be my own advocate, and to live life with a completely new slate.

I am still able to work and do many of the things I love. Being grateful and praying for help, I know that no matter how terrible life gets, there is still hope for better things to come. It would be a miracle to live without seizures. I have epilepsy, I am not my chronic illness, and it will not consume every part of my being. I am trying to make peace with my health, and it's probably the most challenging journey I have ever been on. One day at a time.