Kelsey's Story

Okay so hi I’m Kelsey! I am 17 I’m from Florida and I’ve had epilepsy since I was 13. I had my first seizure at school on August 16th 2016 at around 7:30 in the morning. I was at math tutoring with my bestfriend and our favorite teacher thank goodness it was only us three or I think I might’ve had a worse reaction to what was really going on. I was diagnosed with epilepsy the same day I had my first seizure since I had a few more.


I was misdiagnosed with autoimmune encephalitis in 2017 and that was treated for two years until I just got worse and my mom switched doctors. The doctors I have now told me that since I have a long standing history of autoimmune disorders the doctors who misdiagnosed me probably just used my history to diagnose me with autoimmune encephalitis when in reality you are supposed to have a spinal tap and blood tests to diagnose that. It’s been a roller coaster since then no meds have really worked even since day one really I was finally diagnosed with refractory epilepsy (drug resistant epilepsy) last year after 4 years of trying so many combinations of medications.


The thing about my form of epilepsy is the seizures are being triggered from both sides of my brain when in normal cases it only is triggered from one side of the brain so brain surgery to fix it is out of the question. We’ve tried so many treatments and medications everything seems to be like a “band aid” it works for a few months then my seizures come back. It’s really just a take it one step at a time at this point. I have a great support system and honestly it took me a while to cone to terms with the fact that I’ll probably be like this my entire life and sometimes it still gets to me but I try to stay positive because I’ve almost died so many times and have had to be revived. There’s been times where I’ve been in a really bad state and times when I’m doing really good. I think one day I’ll be okay eventually and I hang onto that hope.“