Olivia & generalized epilepsy with Jeavons Syndrome

  • January 19, 2024
  • 4
In this article
Olivia @liv_chaponis221 smiling with glasses

Meet Olivia from Massachusetts, she’s a Neurodiagnostic Technologist and a Clinical Research Assistant. Read Olivia’s epilepsy story below. 

Introduction to Olivia

I currently live in Boston, Massachusetts but originally grew up in Holden, Massachusetts. I am a Neurodiagnostic Technologist at Beth Israel Deaconess Medical Center and also work as a Clinical Research Assistant for the Neurobiology department at Boston Children's Hospital. In my free time I make content to bring awareness to epilepsy, volunteer and I am planning on furthering my education in Neuroscience.

Olivia’s epilepsy story

Around Christmas time in 2009, I was Christmas shopping with my mom and sisters. All day I was not acting like myself and was behaving totally out of character. My older sister and I had been fighting but I eventually fell asleep in the car on the way home. When I woke up and made my way to bed my sister and I, who shared a room, were arguing again. I do not remember past this point, however, my sister recounts that I had gone to sleep but she started hearing me make noises in my sleep. She called my mom in the room in which they found me with my head in the pillow and having bit my tongue while shaking. 

No one in my family had ever seen a seizure before and didn’t know what to do. My mom told my oldest sister to call 911. The next thing I remember is waking up in the hospital with no recollection of anything but fighting with my sister. It wasn’t until my second seizure around New Years and my first EEG that the neurologist diagnosed me with epilepsy. No one in my family knew what epilepsy was or what that meant for me going forward. I think that moment when the neurologist came to speak to our family was the significant moment for me when I knew that I was embarking on a journey that would change my life forever.

Read more: Our recently diagnosed with epilepsy guide

What seizures do you experience?

I was diagnosed with generalized tonic clonic seizures along with Jeavons syndrome and had a history of PNES in my early teen years. I have experienced grand- mal, absence, and myoclonic seizures. My seizures can be triggered by flashing lights, missed medications, stress and sleep deprivation.

Learn more: Common seizure triggers

What has your experience with doctors been like?

Overall, I’ve had good experiences with doctors. My first neurologist was Dr. Christy Stein at UMass Memorial Hospital in Worcester, Massachusetts. She was the doctor who first gave me my diagnosis. I also saw Dr. W. Curt LaFrance in Rhode Island who helped Dr. Stein determine a more concrete diagnosis. I was then referred to the Epilepsy Center at Boston Children’s Hospital where I was a patient of Dr. Chellamani Harini. She changed my life! She not only was able to help my family and I understand my epilepsy and give us clear answers as to my exact diagnosis. I am in the 10% of people living with my kind of epilepsy and she was able to know exactly how to treat my case and improve my quality of life.

Find out more: How to find doctors who specialize in epilepsy?

How have you found support for your epilepsy?

When I was younger, I attended one of the Epilepsy Foundation of New England’s summer camps where other kids with various forms of epilepsy were able to connect and have fun. Growing up I dove into books, pamphlets and school courses about epilepsy and neuroscience which helped me understand more able the actual brain processes and different forms there are. 

During the height of the pandemic, I found a community in TikTok - follow Olivia on @liv_chaponis221). What started out as funny videos for my family and friends turned into viral videos where I was able to connect with fellow people living with epilepsy, and those with loved ones with epilepsy. The thing that has provided me with the biggest support for my epilepsy is by far my family and friends. Without my village of a support system, I don’t know where I would be. They’re always there when I have my good or bad days.

Read our guide to finding your epilepsy support group 

How do you use the Epsy App?

I love the Epsy App! I originally found it a few years ago when my neurologist told me to keep a log of my seizures and I was searching in the app store and came across Epsy. It was amazing to have everything all in one place. I was able to log seizures, symptoms, get reminders to take my medications and even put information about my upcoming appointments in the app. I don’t have the best memory so the reminders for taking my medications are the best! I get them on my phone and apple watch, so I never have to miss a dose.

What would be your message to someone recently diagnosed?

Everyday is a new day. Through the good and bad you are strong enough to get through it. It may seem scary or intimidating at first, but you have people all around you to support you. Don’t limit yourself and seize the day!

Want to share your epilepsy story?

Drop our team an email on contact@epsyhealth.com or DM us on Instagram @epsyhealth.

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