Epilepsy Canada Influencer: Natalie Smith
Meet Epilepsy Canada Influencer: Natalie Smith
“My goal in life has been to educate people about Epilepsy because I grew up in a society that didn’t have a lot of knowledge about it. I also know what it feels like to be alone being a person with Epilepsy. I want to be there for people who feel alone.”
Her Personal Story:
Hi my name is Natalie I am a 32 year old woman, wife, mother and health care worker. Who unfortunately started having seizures at the young age of 7 when I was with my parents one weekend on our way to go camping! Our weekend got cut short when my first seizure started, it lasted over 15 minutes. My parents called an ambulance as soon as they seen what was happening and ended up meeting the paramedics where I was brought to the IWK in Halifax. Where my story continues, from there started the years of tests MRI’s, video eeg’s you name it.. to see what was going on but back in the 90’s the MRI’s didn't show as much as they do today so the doctors couldn’t figure out what was going on. After a while with no answers they sent me back home.
Home being a very small town not too far from Halifax called Yarmouth. This is where I spent the rest of my childhood having Grand Mal seizures daily but with not much luck from any doctors as they could not figure out where they were coming from in my brain. I was on all the medications you could possibly give me but none of them were working, because they couldn’t figure out where the seizures were coming from and I was not a candidate for any surgeries.
I lost out on a lot of my childhood because my seizures were controlling my life. I struggled in school. Trying to focus because of the medication side effects. Making friends wasn’t easy because no one ever understood what I was going through and back when I was younger Epilepsy was misunderstood and no one was really educated so people looked at me like I had a severe disability. I didn’t have many friends. The ones I had were special and dear to me.
I met my husband when I was 16 and he stuck by my side through some of the worst parts of my Epilepsy because as a teenager it only seemed to get worse.
It wasn’t until I turned 18 that my neurologist Dr. Sadler said to me and my mother we have the ability to do an MRI that will pinpoint where in my brain that seizures are coming from, would you like to have the test done. I said YES! Of course after all these years I need answers!! I had an MRI and it showed that I have a cluster on the left side of my brain that did not develop normally while in the womb at approx 3 months gestation. They were amazed with the results. How can you walk, talk, move your limbs?? It is truly a miracle and I got to see and keep a picture of the scan. They then started me on a new drug at the time “ Topiramate” (Topamax) . I was basically a guinea pig to this medication as it just came out.. It started the medication and within a couple weeks my seizures stopped. The months went by, then years and I am so HAPPY to say it has been 14 years (knock on wood) since I have had a seizure. I got pregnant with my one and only child. Who turned out healthy and I went all my pregnancy seizure free while taking the medication, but unfortunately I cannot have any more kids. I struggle with some side effects from the Topiramate but I will take the side effects over the seizures.
My goal in life has been to educate people about Epilepsy because I grew up in a society that didn’t have a lot of knowledge about it. I also know what it feels like to be alone being a person with Epilepsy.
I want to be there for people who feel alone.
I’ve always wanted to reach out. Even though I am seizure free I am still considered a person with Epilepsy and I have had a lifelong journey with this. This is my story and I could tell you so much more, I hope some of this reaches someone who needs to hear it and I hope I can continue to help people in my life.
The courage of those living with epilepsy,
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