SUDEP article1

Sandhya Narikuzhy, August 21, 2020

 Disclaimer: While this information may be hard to read, it is not meant to scare or discourage you. My goal with this short article is to address the facts and challenges associated with SUDEP, while also highlighting the importance of knowing the risks of SUDEP. I strongly encourage you to have these difficult discussions at home as well as with your healthcare provider. The information below is for educational and informational purposes only. It is not intended to provide medical care or other professional advice, nor is it intended to be used to diagnose or asses health conditions, or to be substituted for professional guidance in treatment.

 

 Tomorrow is a new day. The uncertainty, unknown, and unfamiliarity of “tomorrow” can be exciting at times. However, for individuals living with epilepsy,

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Carter17

Carter’s Epilepsy journey began just after he turned six years old. We heard a strange sound just after midnight, which we thought was the dog, but discovered it was Carter. We didn’t know what was wrong with him or if he was even alive. He was drenched from sweat and his whole body was limp. We called 911 immediately and that is where the adventure began for us. He was transferred from Lakeridge Health Oshawa to Sick Kids Hospital within an hour, and we were told to inform our family of what was happening because the doctors weren’t sure of the results. At Sick Kids Hospital, they ran every test they could think of and Carter was still not awake. No one would tell us what was going on, if he was going to survive, what was wrong... we were just in limbo, waiting. It felt like a lifetime had passed before they realized he was in a seizure.

 


Before Epilepsy became a part of our family, we were like everyone else, and thought that that after Carter’s

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whats happening

Hiiiiiiiiii! My name is Ava and I am an Epilepsy Durham Region Youth Ambassador (you can see some of my work on my very own ambassador page here). I am 10 years old and am excited for you to hear about my Neurology Epilepsy Monitoring Unit (EMU) 5 day hospital stay! This EMU visit will help doctors and me and my family understand more about my seizures. I hope you enjoy discovering epilepsy through my journey!

 

October 7th, 2019 | Day 1 of 5

 

The struggle is real for Ms. Ava tonight. Weaning off her medication makes her feel off and has caused some nausea. We were up at 5:15 am and have to stay awake until 11:00 pm, the IV is

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pic programs1

When it comes to service dogs, it is important to be properly educated on their role in the community. They are trained to keep their owner with a disability safe and protected at all times, particularity when they need immediate attention. When a person has epilepsy, they may choose to have a service dog to help them in the case of a seizure.


To begin, most service dogs are not able to tell when a person is about to have a seizure; however, they are able to protect an individual when they are having one. There are multiple ways that a service dog may respond to a seizing person, which depends largely on the situation. This can include: the dog may choose to stay with the individual, may be trained to retrieve medication, may alert the nearest person or their caretaker or can activate an emergency call system (Service Dogs 1). Regardless of the response protocol of the service dog, it should be noted that this is what has been decided is best for the seizing person

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TTC button

As a person with epilepsy, I often get told to hide my disease. I get told to make sure that I do not tell my employers or that other people do not know; unless they truly have to. Well, if I spend all of my time hiding my disease from everyone, why should I be expected to disclose it to random strangers on public transit?


Evidently, this logic does not make sense. I believe that the whole purpose of this initiative was to showcase invisible illnesses; however, people will still never be able to understand what they cannot see. This means that regardless of whether or not a person is wearing a button, people will still not give up seats because they cannot see that anything is physically wrong with the person.


I truly do not think that having a button is required as it simply sets disabled people aside from abled bodies. This makes it easier for people without a disability to pick on others and victimize those with one. The Canadian Epilepsy Alliance

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