Hi, my name is Maya and I have had epilepsy since the age of 3. I have specifically Juvenile Myoclonic Epilepsy as well as non-epileptic seizures. Luckily I have been able to manage it with medication. I did go seizure free for quite a period of time but right after my 16th birthday my seizures returned. Now being 17 I realised how important it really is to spread more awareness about epilepsy and different seizure disorders!
When I was about 11 I went through a 5 day EEG stay at Hopkins where I was weaned from my medication and was told I was seizure free. Being so young I didn’t quite understand—I was more concerned about the glue in my hair!
It was super late one night in July of 2023 when I began to feel “seizurey” and decided to get my mom. We then again made an emergency trip to Hopkins and after countless waiting I got an EEG that showed my epilepsy was back. This was a massive change for me as I was in the middle of my junior year of high school and I really didn’t know things would progress from there.
After other tests in 2024 and another stay in the EMU, I was diagnosed with Functional Neurological Disorder along with my epilepsy. When I got this diagnosis, I felt so defeated; I felt as if nobody believed me and that it was truly in my head, I felt that I left this EMU stay with no answers. With the diagnosis of FND, all I heard was crazy and I can admit that I’m still coming to terms with it. I just think I’m my case, having dealt with epilepsy for so long it would’ve just been easier to hear that what I was experiencing was epileptic rather than adding a new thing to my list of many problems I have.
I began to experience these both epileptic and non-epileptic seizures at school when I realised I need to tell my friends more about my conditions. I was so embarrassed having to explain why I wasn’t able to drive or even attend certain things because I was really just exhausted. I knew that I shouldn’t make myself suffer in silence anymore, so I told my friends.
I’ve been lucky enough to have an incredible group of friends who are nothing but supportive towards me! Times where I’ve felt like an inconvenience having to ask for rides or not being able to attend fun times with them I’ve been shown so much love from them and it is something that never goes unappreciated! I think that they have been some of the best people who have most shown me that I have nothing to be ashamed of at all!