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My name is Petrina Diamantakos.
I’m 19 years old and am currently pursuing a Health Sciences degree at Western University. One year ago, I began working at Epilepsy Simcoe County (ESC) in Barrie as a way to learn more about healthcare charities, and how necessary they are for the communities they serve; and let me tell you, they are necessary.
Here at ESC, our mission is to help those in Simcoe County affected by epilepsy with advocacy, awareness, education, and support.
I have learned that these things are easier said than done. Especially one in particular: awareness.
The rest of our mission statement is directed more towards individual clients, whereas awareness is directed towards the entire Simcoe County population, which can make it a challenge. I’m writing this article to try to change that; so that people in Simcoe County can take away three key things; WHO needs to be talking about epilepsy, WHY it needs to be more than just people with epilepsy, and HOW to start the conversation.
I’ve already answered the WHO question – by directing this article at the population of Simcoe County – but it’s more than that. If you think your life hasn’t been affected by epilepsy, you’re most likely mistaken. With 1 in 100 people having epilepsy, there is a very high chance that you’ve encountered someone with the condition; that’s why everyone needs to be having a conversation about epilepsy, not just those directly affected. It’s not only a cause for people with epilepsy, it needs to be everyone’s cause.
As for the answer to the WHY, I’ve already hinted at that as well. Epilepsy is a very complex condition that has no cure, and can be very difficult to manage. For about 30% of people with epilepsy, medication will not be able to control their seizures. This is a huge reason why everyone needs to be having a conversation about epilepsy. At any time, whether you’re shopping, at school, at the gym, etc, there is a possibility that someone could have a seizure around you. When someone with epilepsy seizes, there are times when it may be necessary to call an ambulance (but not all seizures are a medical emergency). This means you – as a citizen – need to be informed about what to do to help that person during that time. Seizure first aid is an incredibly simple thing to learn, but not many people are aware of it unless they – or someone in their family – is directly affected by epilepsy.
Setting safety aside for a moment, there are also many other issues surrounding epilepsy that need to be discussed including but not limited to; diagnosis, treatment, bullying, social life, transportation, and so on.
Finally, HOW can you start the conversation today:
- Educate yourself — Learning about epilepsy, seizure first aid, and reading articles like this one are all steps in the right direction for becoming more informed about. The more informed you are, the easier it’s going to be to discuss issues surrounding epilepsy and solutions to them.
- Be kind — Kindness is the best medicine, and it goes a long way. Kindness starts a butterfly effect, and the kinder you are, the more kind others will be. Currently, research shows kindness has amazing results on health – not only for the person receiving the kindness – but also to the person spreading it. It costs you nothing, but pays you back in spades.
- Be an advocate — Support those in your life affected by epilepsy, and try to help them in any way you can in your position. The healthcare system is not an easy ride, so stand by them in times when they need it. Being an advocate can also go beyond healthcare. You can also help by educating others, answering questions, or even supporting agencies like ESC, who advocate for you.
- Ask questions — If you are ever confused or curious about epilepsy, ask someone who has it or is educated on the topic. Most people with epilepsy want their stories heard, and told the right way; so what better way than to hear it come right from them.
- Listen to the answers — Too often people with epilepsy can be overlooked to stereotypes and stigma around the condition. When consulting someone about epilepsy, actively listen to what they are saying. They are a valuable source that should never be taken for granted.
To conclude this article, I want to mention that epilepsy is never a done deal; you can never be too educated or have too many conversations. New information about epilepsy comes to light every single day, and you can never learn to much. So I hope this article has given you a new perspective on how to approach talking about epilepsy. It’s not something that should be feared or disregarded; it’s something that needs to be embraced, learned, and taught. The conversation is never over, and I hope you won’t quit.
I know I won’t.
(Leave your comments and questions below in how you will be starting – or continuing new conversations and awareness about epilepsy)