Shake, rattle, and roll: my experience with epilepsy


(Courtesy of Lianne Guttadauro)

Freshman Lianne Guttadauro is smiling with her polka-dotted purple pumpkin that she painted to earn the purple pumpkin project pin.

     Bam! You have to sit down on the floor, all of a sudden because a backpack hit you on the shoulder in the middle of the hallway. Students and teachers have their eyes on you because your leg is frozen and your arm is shaking uncontrollably. 

     That’s what happens to me frequently but, it’s not always a backpack. It can be a water bottle dropping, car horn, or even as little as stubbing my toe. 

     My doctor suggested surgery a couple of years ago, my mom said no and wondered if there was another option. Ultimately there was, and it was a diet. 

     Now, in eighth grade, this diet was the worst thing ever. My sister, Senior Kierra Guttadauro thought so too, and we rarely agree. I could only have 25 carbs or less. That’s super hard to do when you are at school and it’s a big cookie Friday and I want one, but I have to resist, and now I pack my lunch and I’ve always bought. 

     November is epilepsy awareness month. 

     According to National Today, “National Epilepsy Awareness Month in November is an annual event that teaches people about epilepsy’s causes and symptoms. 1 in 26 people will be diagnosed with epilepsy at some point during their lifetime. Epilepsy is one of the least understood of all the neurological diseases, yet it is the fourth most common.”

     Kids with epilepsy can sign up with kids crew, an organization where kids with epilepsy and, siblings under the age of 14, can earn pins by fundraising and doing activities to earn them. There are many family and friend projects and events people can participate in, such as painting your pumpkin purple, doing the 5K run/walk, a Great Scavenger Hunt or community awareness day.

     Ever since I joined I have participated in most of the activities that come up, usually there all on Zoom. Once I joined they mailed my kid’s crew package and now, since I signed up for the monthly newsletters I get to read other people’s stories. 

     This year I took part in the purple pumpkin project and painted my pumpkin purple. Last year, I went around with my mom and sold lemonade. I raised over $500 and reached my goal of $100. 

     Kids crew isn’t the only thing that helps you talk about experiences about your epilepsy journey. 

     Georgia is where I went for summer camp, it was an amazing experience and the BEST thing ever. I’m going again because the campers were friendly and so nice. This camp was an epilepsy camp and the campers were super welcoming to me because they didn’t know me and they knew each other. I still stay in touch with them now. 

     SUDEP and SIDS are both scary; they both have 1 in 1,000 dying rates. SUDEP or sudden unexpected death in epilepsy, the person dies immediately after the 5+ minute seizures. We don’t want this to happen but, sadly it still does. SIDS or Sudden infant death syndrome. SIDS only occurs when there is a baby. You must be less than a year old to get it.  

     The diet didn’t work so, we stopped and went with the Vagal Nerve Stimulator or VNS. The VNS goes in the chest. You get a magnet that must be worn and not around devices or else it wipes out the memory. Fun. The magnet now lives around my neck on a cool lanyard or my wrist when I’m out and about, so it’s easy to access when I have a seizure. 

     It’s not what I had planned but, I made this invisible disease work to my advantage as much as I could make it. My friends, family, and teachers at school who all care about me all know how to work my magnet just in case I have one. 

     Like I previously stated, epilepsy is a hidden disease so, you might not know what someone is going through. It might just be a bad day or a lifelong thing like mine, but it doesn’t give you the right to be mean at first sight. Get to know them before judging.