Disclaimer: I am not a medical professional. I will be sharing factual data that I will cite, but the rest will be based on my personal experience and journey. Everyone's epilepsy is different, even while having the same type. No two cases are alike.
I have Jeavons Syndrome (which is scientifically called Epilepsy with Eyelid Myoclonia, but I will refer to it as Jeavons Syndrome throughout this post). I want to begin this with my reasoning behind posting this blog. Jeavons Syndrome is rare, and I have yet to meet another person with this type of epilepsy. Very few articles are available, so when I was diagnosed, I had a hard time understanding what it was. I hope this blog will reach another person who has it and will help others learn about it!
What is Jeavons Syndrome?
Jeavons syndrome is an idiopathic form of epilepsy that is characterized and multiple types of
● Eyelid Myoclonia (with or without absence seizures)
● Tonic-Clonic Seizures
● Myoclonic Jerks
While Jeavons Syndrome is not drug-resistant, it's tough to eliminate all seizures as the medications stop the tonic-clonic seizures but not the eyelid myoclonia. Jeavons syndrome is more commonly found in women than men, and men tend to have a better prognosis. The age of onset is 2-14 years of age. People with Jeavons Syndrome make up around 1% of those diagnosed with epilepsy (Epilepsy Foundation).
What My Life Looks Like with Jeavons Syndrome
I was diagnosed with Jeavons syndrome at 13. I went in for one EEG, and they immediately diagnosed me with epilepsy that day. My typical seizures include rapid fluttering/blinking of the eyes, myoclonic jerks in my hands, and myoclonic jerks in my head/neck. In addition, I have absence seizures where I black out or look like I am daydreaming. Most people don't understand that these are seizures, but part of my goal is to share how different seizures can look. My seizures aremainly controlled, but I still experience seizure activity throughout each day, making me ineligible to drive.
I also struggle with mental illness, which started simultaneously with my seizures. We thought it was just a coincidence, but recently I learned it wasn't. After many hours of digging for reports on Jeavons Syndrome, my psychiatrist determined that my seizures are a primary component of mental illness. I have ADHD and Borderline Personality Disorder, which correlate significantly to Jeavons syndrome. I had a tough time accepting this. I had these mood and behavioral changes that I couldn't control. I felt like my body wasn't my own, and I spent most of high school trying to separate myself from my epilepsy and mental illness. But I've been doing better, and here is why. I will always have seizures, and I can't change that.
I will always struggle with mental illness, and I can't change that. But I can control myself, who I am, and my values. Epilepsy changed my life, but today I choose to move forward.