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Jessica Smith, Founder of Living Well With Epilepsy, shares her epilepsy journey

Jessica Keenan Smith, Founder,
Living Well With Epilepsy
Derra Howard, Founder, Saving Grace Epilepsy Foundation

Derra Howard, Founder of Saving Grace Epilepsy Foundation, sat down with our founder, Jessica Keenan Smith to talk origin stories. Derra wanted readers to know more about Jessica’s journey with epilepsy. Below you will find Derra’s insightful and thought provoking questions:


Derra Howard: Tell me when you first had a seizure.

Jessica Keenan Smith: I had my very first seizure as a baby. It was a fever seizure. But my first “unprovoked” seizure happened when I was around age 12. It was the summer between seventh and eighth grade. I was preparing to go on vacation with my best friend’s family. I remember I was really looking forward to the trip. 


DH: Where was it?

JKS: The seizure happened in the upstairs hallway in my childhood home. I remember the rough feel of the green rug underneath me as I my consciousness returned. It was a pretty severe grand mal or tonic clonic seizure. Sadly, I was wearing a bathrobe and heading to take a shower. Needless to say, I was not happy to find myself splayed out in the hallway for a bunch of medics and my parents. As a pre-teen that may have been the worst part at least initially.


DH: How did that affect you?

JKS: That’s a big question. I’m still trying to answer that one. I’ll be honest, there have been positives and negatives. Having epilepsy has affected my sense of self, and the lens through which I see the world. It has affected where I live and who I choose to love. It has impacted my brain, my bones, my blood and my skin. It has affected my career choices and what is important to me.


DH: Where you Alone?

JKS: My parents have talked about hearing a thud come from upstairs. They have talked about how my dad ran upstairs to see what was happening. He did not know he should not put anything in my mouth and with no regard for his own safety he put his own fingers in my mouth during the seizure. This was a problem because I had pretty intense braces at the time. The poor man walked around with bandages on his hands for a while.


DH: Are you seizure free now?

JKS: Yes, I have been seizure free for about 18 years. My last seizure was just after my daughter was born. 


DH: What have you learned about your epilepsy?

JKS: Honestly, I have not learned too much about my own epilepsy. I am still diagnosed with idiopathic epilepsy. Over the years I have had CT Scans, MRIs, Video EEGs, Sleep deprived EEGs, EEGs at home and still nothing. It is true, I have been living with this disease for more than 30 years without answers. However, I am lucky to live in a first world country, with access to the latest medication, some of the best neurologists in the world and state of the art technology. 

This has made me wonder for many years how can we expect the 80% of people with epilepsy who are living in developing nations to thrive when they lack access to medication, medical care by a neurologist, or diagnostic technology. 


DH: Are you on any medication?

JKS:  Yes, I have been on a cocktail of anticonvulsant medications since I was a pre-teen. I still take medication every morning and night. I had one year that I was able to be free of medication. But sadly, my seizures returned, and I was put back on medication. I will be on meds for the rest of my life. My age, type of seizures and length of time I have been living with epilepsy all increase my risk for SUDEP.


Thank you to Derra Howard for your interest in Living Well With Epilepsy. We are planning to co-host a Twitter Chat later this month. So watch this space for more information.

2 Responses

  1. Clint Groenewald
    | Reply

    Hi, my name is Clint and I live in a small town called Darling in the Western Cape, South Africa. I started experiencing aural episodes from the age of 27 but never sought medical advice (wish I had) I had my first Grand Mal seizure at 50 and am on medication for the past 2 years; in total I have had 4 seizures in 2 years (apparently this is under control). My drivers license has been revoked and I am forbidden to drink caffeine or alcohol. This has had a profound impact on my self-esteem and independence; all the things I enjoyed and took for granted are gone and I’m at a loss emotionally as well as physically. My partner is very understanding but I know that it isn’t easy for her as we were always completely compatible, both emotionally and physically (both seem like a distant memory) and I don’t know what to do anymore; it feels like I’ve lost my best friend. I’ve spoken to my GP, asking for a supplement to increase my libido and improve my lack of emotions but due to the epilepsy medication, this is very risky…. I’m at a loss; what do I do?

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