Emma’s Epilepsy Experience

Did you know? March 26 is Epilepsy Awareness Day in Canada – a day to recognize and build awareness for epilepsy, a seizure disorder that affects 1 out of 100 Canadians.

Epilepsy doesn’t discriminate! It also affects youth, like Emma. Emma has been a member of Upopolis for over a year and to help spread awareness about epilepsy, she took over the Upopolis blog! Learn more about epilepsy, her experience from a youth perspective, and tips for how to ween off medication if treatment allows. Check it out below:

Hello! My name is Emma. I was diagnosed with epilepsy when I was around 5 or 6 years old. Epilepsy is a disorder that causes you to have seizures. A seizure is when lots of cells in the brain send out messages to certain parts of your body at the same time. This can cause muscle spasms, loss of consciousness and abnormal behaviour such as staring for some time, etc. There are a few different types of seizures, so symptoms can vary depending on the type of seizure you have. If you would like to know more about epilepsy and the different types of seizures, visit www.epilepsytoronto.org.

In my case, I have tonic-clonic seizures. “Tonic-Clonic seizures are characterized by a fall and rigidity. It is followed by shallow breathing or temporarily suspended breathing, bluish skin and possible loss of bladder or bowel control. The seizure generally lasts a couple of minutes. There may be some confusion and/or fatigue, followed by a return to full consciousness.” (Epilepsy Toronto) I have had a few seizures over the years until I started taking pills to control them. I am really fortunate to not have severe seizure activity. Some people have multiple seizures every day and medication does not work to control this. I ended up having to switch to a different seizure medication because of some minor side effects that were affecting my emotions. I got angry way easier and my parents said that I wasn’t myself. 

I have had multiple seizures at school as well as at home. And, believe it or not, even on Christmas Day. My first seizure was at a sleep-away camp. I always told people that, “I was baking peanut butter cookies and I was waiting for the fork to put the marks in it. Then, you know what happens.” I don’t remember a lot from after the seizure. The only other thing I remember is waking up for a split second in the ambulance. (And the fact that it was around 8 years ago doesn’t help…)

As of now, I haven’t had a seizure in around 4 ½ years! 5 if I can go until November. I had an EEG a few months ago. An EEG is a way to scan brain waves and in my case, look for seizure activity in my brain. The EEG came back abnormal, but because I haven’t had a seizure in a long time, my Neurologist (Brain doctor) said that I could start weaning off my medication! I was also on a low dosage than I should be and nothing was happening so she thought it was safe.

Weaning is when you slowly start taking less and less of your meds until you hopefully aren’t taking any. I started out taking 1 ½ pill twice a day. I took away a ½ every 2 weeks. Now, I am not taking any! Sometimes I still catch myself going to take my pills! I felt really excited when I got the news. I was so happy that I could finally stop taking my medication. After a bit of time, I started feeling scared. I was nervous that it wouldn’t work and I would have to start taking pills again. But, my family talked to me and helped me feel less nervous. They also told my teacher, and we told the class about it, and what to do if I do end up having one. I am so fortunate for my amazing and supportive community! 

If you have epilepsy, know that you are not alone! Remember to stay strong. Even if you can’t cure your epilepsy, you will be okay. Remember, 1 in 100 people have epilepsy. That sounds small, but if you do the math, that’s around 80 million people worldwide! So, if you ever need to talk, as one out of 80 million, I am here. For those of you on Upopolis, message me! If you’re not, tell a trusted adult you need some more support and they will help connect you with the right people. We’re in this together!

If you or someone you know has epilepsy, is aged 10-18, and would like to meet other youth with the same diagnosis, e-mail support@upopolis.com to get signed up to our online social platform for youth with medical illnesses!

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