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Seizing the Day with Epilepsy



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What is Epilepsy?

Epilepsy is a neurological disorder characterized by seizures. These seizures are caused when groups of neurons send the wrong signals, and there is a sudden surge of electrical activity in certain areas of the brain. This means someone with epilepsy may experience involuntary movements, thoughts, feelings, or lose consciousness for a period of time. 


There are various types of seizures, identified by how they impact brain activity, and where. While focal seizures occur in just one specific area and have symptoms directly related to the affected area, generalized seizures, which are less common, occur on both sides of the brain.


Epilepsy can impact anyone, regardless of age, race, or sex. It may occur as a result of another condition that impacts neural activity. This could mean brain tumors, head trauma, strokes, or infections such as meningitis. There are also several genetic factors that may be linked to epilepsy, including certain genes that increase the likelihood of its development, or contribute to a person’s resistance to antiseizure drugs. 


Though seizures present obstacles, many people attribute their positive outlook on life and their determination to their epilepsy. Epilepsy shouldn’t stop you from living a full, active, productive life just as those without.  




Despite Epilepsy

Though it feels debilitating, whether physically or mentally, epilepsy isn’t the end. Seizures become a part of you, but they aren’t you. It’s just another reason to live life to the fullest. 






Managing Epilepsy

Know your epilepsy.

Make your space a safe one.

Take care of your body.

Take care of your mind.

It can also be helpful to wear some sort of medical identification such as a bracelet that says you have epilepsy so that in the event of a seizure while away from home, someone can help you.




Caring for Someone with Epilepsy

Epilepsy is a different experience for everyone. While some people might need care all the time, some may require your help only when they have a seizure. For some, this may be everyday, multiple times a day, or more rarely. It is important that you, as a person who cares, let them know that you’re there for them. 

Know their epilepsy.

Ensure safety during a seizure.

Know when to call for help.

Encourage them.


Support

Support can be found anywhere. To find local support, simply search “Epilepsy Support in [Your area]”


Here are just a few:


Epilepsy Toronto is an organization that provides support for everyone to find a safe place to talk about experiences, concerns, and to meet people with similar lives. This includes support groups for youth, young adults, expecting parents, adults, and professionals. There are also support groups that discuss specific topics such as surgery or employment, as well as a recreational group. They even offer support for parents, siblings, and partners of people with epilepsy. Most meetings are held virtually. 


Epilepsy South Central Ontario offers support services for individuals and families to receive assistance, guidance, as well as have an inclusive and safe space to discuss epilepsy and its associated challenges.  


The Epilepsy Foundation is an American foundation that offers support in every state, both virtual and in-person. They offer support for people living with epilepsy in addition to their loved ones. 


An American organization that offers a place for help to be offered, experience to be shared, stories to be told and friends to be made. They also encourage engaging in advocacy.



Helpful Resources


Organizations

Medical Information

For caregivers and parents

Emotional Support


References

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Canadian Epilepsy Alliance. (n.d.). Canadian Epilepsy Alliance: Home. Retrieved September 22, 2024, from https://www.canadianepilepsyalliance.org/

Centers for Disease Control and Prevention. (2024, May 15). Managing Epilepsy | Epilepsy. CDC. Retrieved September 22, 2024, from https://www.cdc.gov/epilepsy/living-with/index.html

Cervantes, K. (n.d.). Seizing Life Podcast – CURE Epilepsy Image 1. CURE Epilepsy. Retrieved September 22, 2024, from https://www.cureepilepsy.org/seizing-life/

Child Neurology Foundation. (n.d.). Child Neurology Foundation. Retrieved September 22, 2024, from https://www.childneurologyfoundation.org/

Cleveland Clinic. (2022, November 3). Epilepsy: What It Is, Causes, Symptoms, Diagnosis & Treatment. Cleveland Clinic. Retrieved September 22, 2024, from https://my.clevelandclinic.org/health/diseases/17636-epilepsy

Doing Motherhood Differently. (n.d.). Apple Podcasts. Retrieved September 22, 2024, from https://podcasts.apple.com/us/podcast/doing-motherhood-differently/id1456972231

Epilepsy Action. (n.d.). When someone has a seizure, CARE. Epilepsy Action. Retrieved September 22, 2024, from https://www.epilepsy.org.uk/when-someone-has-a-seizure-care

Epilepsy Action (Director). (2013). Epilepsy and the art of being positive [Film]. Youtube. https://www.youtube.com/watch?v=EIvACF-LXos

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Epilepsy Foundation. (n.d.). How Can I Start Managing Seizures? Epilepsy Foundation. Retrieved September 22, 2024, from https://www.epilepsy.com/manage

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Epilepsy Society. (2020, October 21). Personal stories. Epilepsy Society. Retrieved September 22, 2024, from https://epilepsysociety.org.uk/living-epilepsy/personalstories

Epilepsy Society. (2024, January). Caring for someone with epilepsy. Epilepsy Society. Retrieved September 22, 2024, from https://epilepsysociety.org.uk/about-epilepsy/information-carers/caring-someone-epilepsy

Epilepsy South Central Ontario. (n.d.). Counselling and Support Groups – Epilepsy South Central Ontario. Epilepsy South Central Ontario. Retrieved September 22, 2024, from https://epilepsysco.org/programs-services/counselling-and-support-groups/

Epilepsy Toronto. (n.d.). Epilepsy Toronto. Retrieved September 22, 2024, from https://epilepsytoronto.org/

Epilepsy Toronto. (n.d.). Our Stories. Epilepsy Toronto. Retrieved September 22, 2024, from https://epilepsytoronto.org/about-us/epilepsy-toronto/member-stories-get-inspired-2/

Epilepsy Toronto. (n.d.). Support Groups. Epilepsy Toronto. Retrieved September 22, 2024, from https://epilepsytoronto.org/about-us/programs-and-services/support-groups/

Great Big Story (Director). (2017). Epilepsy Can't Stop this Runner [Film]. Youtube. https://www.youtube.com/watch?v=OScBxa6FpCk

Grunberg, G. (n.d.). Talk About It! — The Podcast | Talk About It! TalkAboutIt.org. Retrieved September 22, 2024, from https://talkaboutit.org/epilepsy/podcast

Henry Ford Health. (2023, January 24). 10 Life Hacks For Living With Epilepsy. Henry Ford Health. Retrieved September 22, 2024, from https://www.henryford.com/blog/2023/01/10-life-hacks-for-living-with-epilepsy

International Bureau for Epilepsy. (n.d.). International Bureau for Epilepsy | The IBE. Retrieved September 22, 2024, from https://www.ibe-epilepsy.org/

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Mayo Clinic. (2023, October 14). Epilepsy - Symptoms and causes. Mayo Clinic. Retrieved September 22, 2024, from https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093

National Institute of Neurological Disorders and Stroke. (2024, July 19). Epilepsy and Seizures | National Institute of Neurological Disorders and Stroke. National Institute of Neurological Disorders and Stroke. Retrieved September 22, 2024, from https://www.ninds.nih.gov/health-information/disorders/epilepsy-and-seizures

The Ontario Caregiver Organization. (n.d.). Supporting Someone With Epilepsy - Ontario Caregiver. Ontario Caregiver Organization. Retrieved September 22, 2024, from https://ontariocaregiver.ca/health/epilepsy/#block_0e560743e7a9d8a0b8e235a6c7946897-0

Sharmin, E. (2017, November 1). Loving Someone With Epilepsy | Blogs | CDC. CDC Blogs. Retrieved September 22, 2024, from https://blogs.cdc.gov/publichealthmatters/2017/11/loving-someone-with-epilepsy/

SickKids. (n.d.). Epilepsy Classroom. SickKids. Retrieved September 22, 2024, from https://www.sickkids.ca/en/learning/patient-family-education/epilepsy-classroom/

Warshawsky, J. (n.d.). Accepting The Unacceptable, Parenting Autism, Epilepsy, Special Needs. Apple Podcasts. Retrieved September 22, 2024, from https://podcasts.apple.com/us/podcast/accepting-the-unacceptable-parenting-autism-epilepsy/id1436220321

 
 
 

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