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Did you know this?: Facts About Epliepsy

MyNameIsNicole March 29th, 2022

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Hi everyone, it's still epilepsy awareness week so this is a post under the event!

Facts About Epilepsy That You May Or May Not Know..

  • Anyone can develop epilepsy. Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.
  • Epilepsy is not a rare condition. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's disease, and traumatic brain injury.
  • People with epilepsy are usually not physically limited in what they can do. During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.
  • There is still urgent need for medical research on epilepsy, better treatments and a cure for epilepsy. Although medication can successfully control and manage seizures, treatment does not work for everyone. There are at least a million people with uncontrolled epilepsy according to epilepsy.com
  • Epilepsy affects people in different ways. There are different kinds of seizures, and some people may have multiple of them or an underlying health condition that causes epilepsy. Seizures look different depending on the type, some seizures cause people to collapse, shake and be unaware of their surroundings.
  • Some people might not know this, but epilepsy is not contagious. So if an epileptic person requires help when having a seizure (such as calling 911 if if becomes prolonged, making sure they are safe, etc) do not hesitate to help them.
  • There is no cure for epilepsy yet although there are treatments to manage and control seizures.
  • Since everyone with epilepsy is different, although they may have stereotypical characteristics when having a seizure, triggers may vary.

The next post would be on how you can support someone with epilepsy when having a seizure, and the types of seizures. It would be linked in the masterpost which you can find by clicking HERE.


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References:

Facts About Seizures and Epilepsy

Epilepsy Fast Facts

Facts About Epilepsy


Since you made it to the end, can you tell us what you have learned?








28
audienta March 29th, 2022

@MyNameIsNicole

Hey Nicole

Thank you for this post! I'm afraid, I haven't learnt something new, but it was interesting anyways. 😉

In addition to the fact that epilepsy isn't contagious and you should help the person experiencing a seizure, you should definitely not try to stop their movements. I think that's a very important point that a lot of people don't know. Is there a post coming on seizure first aid? 😳😊

2 replies
MyNameIsNicole OP March 29th, 2022

@audienta yes there is a post coming on seizure first aid!

do you want to collaborate with me on it?

2 replies
audienta March 29th, 2022

@MyNameIsNicole

yay! Sure, I'd love to! ❤️

2 replies
MyNameIsNicole OP March 30th, 2022

hi @audienta, that's great. I'm sending you the planning doc here: https://docs.google.com/document/d/1qyHN1bh6zhJ5wOYfqEiqXGkE5CLXBqqZf7Of01G54xI/edit?usp=sharing

I do plan on making this today so I can make more this week!

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EmpatheticListener0309 March 29th, 2022

I've had epilepsy for 22 years and I thought it was interesting but because of my life experiences with it, I had a good understanding of what it is and what types there are and what to do when a person has a seizure. I'm a massive advocate for epilepsy awareness I have been doing fundraising events since I was 17. The purple day isn't just for awareness for the 50 million people who have it, it's a day where we enjoy the day that is especially for those who have both epileptic and non-epileptic seizures and wear purple to show support. I hope people on here had a good purple day. Stay strong.

6 replies
audienta March 29th, 2022

@EmpatheticListener0309

Hey there

It's great to hear that the purple day is for people with non-epileptic seizures too. I was already wondering if there was a day for those people.

It's also wonderful that you've been an advocate for people with seizures for so many years! Take care! 💜

1 reply
EmpatheticListener0309 March 30th, 2022

@audienta

It is very inclusive, and I have both epileptic and non-epileptic seizures. It's not uncommon to have both. There are 40 different types of seizures, and due to media representation of seizures, people don't understand that there is more than one, as on TV shows, people with grand mal seizures, the ones you can visibly see. My goal is to hopefully break down the stigma that unfortunately comes along with epileptic and non-epileptic seizures, as some seizures can be invisible to others. For instance, a person might stare into space for 10 seconds, categorised as an absence of a seizure. Some people don't understand it is a seizure and think they aren't paying attention.

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MyNameIsNicole OP March 30th, 2022

@EmpatheticListener0309 thank you, it's always great to hear from someone who has experience. I'm glad you've been an advocate for epilepsy awareness as not a lot of people know how to effectively support people who have seizures (whether epileptic or not), and there is still research required and not everyone has access to healthcare as well.

Would you like to join our upcoming interview series that aims to educate and spread awareness about chronic pain, chronic illness, neurological disorders, etc by people who have direct lived experience?

4 replies
EmpatheticListener0309 March 30th, 2022

I would definitely be interested.

3 replies
MyNameIsNicole OP March 30th, 2022

@EmpatheticListener0309 thank you for your interest, I will tag you in a future post regarding this.

You have so much knowledge on this subject, and it would be so beneficial to hear from you❤️

MyNameIsNicole OP March 30th, 2022

@EmpatheticListener0309 Hi again, please fill out this form to indicate interest for the interview series:

https://forms.gle/RnKcvnfkax5gT5KY6



1 reply
EmpatheticListener0309 March 30th, 2022

I have submitted the form, when and where would this be held?

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glasseyedgrace March 29th, 2022

@MyNameIsNicole. I actually have Epilepsy, so thank you for helping to spread awareness!

1 reply
MyNameIsNicole OP March 30th, 2022

@glasseyedgrace thank you for being here, take care❤️

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AffyAvo March 29th, 2022

@MyNameIsNicole Thanks for sharing this, it's great information!

I knew epilepsy wasn't rare but I didn't know just how common it was compared to things like CF and MS.

I was also unaware of the variance of age of onset! I was aware that it does develop in adults but I always thought of it as occurring relatively young ie. under ~30. So that's useful information especially considering many of the people I see in real life are past the young adult stage.

1 reply
MyNameIsNicole OP March 30th, 2022

@AffyAvo I agree, you learn something everyday (:

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ListenerIvana March 29th, 2022

@MyNameIsNicole Thank you for this post!

I am a person with epilepsy and for a long time I kept silent about it because I didn't want to live with the stigma surrounding it. However, I realized that the only way to get rid of the stigma is TALKING ABOUT IT.


A lot of people view epilepsy as something negative or as a setback in life. It's not.

A lot of people associate epilepsy with seizures and foaming mouth. It's not just that.

Epilepsy comes in various shapes and forms. There are types of seizures that make you twitch and collapse (motor), but there are also seizures which are non-motor such as staring into the distance and being unresponsive to your surroundings.


If you want to learn more about epilepsy, here are some links you might find useful:

1) Types of Seizures | Epilepsy | CDC

2) 4 types of epilepsy, their symptoms, and treatments (medicalnewstoday.com)


-Ivana

1 reply
MyNameIsNicole OP March 30th, 2022

@ListenerIvana I love to see this, we need to break the stigma around epilepsy!

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MoonLightShadow423 March 30th, 2022

Happy epilepsy awareness. I might be late. I have epilepsy. I do my best to handle the daily grind at work.

Xatharr March 30th, 2022

@MyNameIsNicole Tysm for another informative post! I thought it pretty much developed in children and rarely in adults. I’m looking forward to learning more in the next post!

3 replies
MyNameIsNicole OP March 30th, 2022

@Xatharr

yay awesome, I'll be sure to put out an alert so you don't miss it


MyNameIsNicole OP March 30th, 2022
1 reply
Xatharr March 31st, 2022

@MyNameIsNicole thank you!

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MusicTherapist91 March 30th, 2022

My friend at University is getting surgery this summer for his epilepsy. Last night he had a really bad seizure and couldn’t attend class today

LostTheRoughEdges March 30th, 2022

Something to know: After a person has had a seizure, they may be up, walking around, answering questions, appearing normal. They are not. A seizure is like a serious concussion. It takes days, even weeks for the brain to recover.

For at least a week after a seizure, my short-term memory is shot. I stutter. My balance is off. I am emotional and temperamental. Things taste funny. And the migraines, ohhh the migraines.


1 reply
LostTheRoughEdges March 30th, 2022

@LostTheRoughEdges -- I'm not complaining, It is what it is. But we live in a world where people like quick resolutions. People love to say things like ""Mike had a seizure this morning, but now he's fine"".

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enthusiasticTortoise6681 April 17th, 2022

@MyNameIsNicole a lot