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kunaigirl · 10 months

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Happy Disability Pride and awareness month! Let's talk about Epilepsy!

Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!

First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.

The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)

Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.

If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.

At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.

As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.

And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.

My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.

Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.

If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.

#epilepsy #epilepsy awareness #actually epileptic #disability pride month #disability awareness month #disability awareness #ok to reblog #disability pride

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azmaarts · 1 year

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The Bat-LANGUAGE (WARNING: SWEARING)

The process of making this comic can be simplified to that yes-no-orange-jacket-guy meme.

Me working on my pile of assignments, studying, and drafting college applications: (￢_￢;)

Me screeching at my first comic thingy and only discovering "gutters" after I spent a full day of break drafting, and about to boogie the living hell out of Koalemos himself: ( ⊙ꇴ⊙ )

This post was based off of @theaceofarrows's post! Check out their post through this link!

Since it's Epilepsy Awareness Month, I tried to finish this at least sometime in November... even if it meant starting on the 27th, finishing it on the 29th, and posting on the 30th.

If you (or anyone around you) want to get a basic understanding of epilepsy, try epilepsy.com. Even though Epilepsy Awareness Month is ending, it's not like epilepsy is gonna suddenly vanish. SO. Donate and/or spread the info. And as always, be wary of what you read/find on the internet.

P.S.

Gotta prepare my college applications Part II so I had to speedrun the rest of the coloring which has essentially become... blobs??? !(꒪A꒪|||)

Drafting and "line-art-ing" took two solid days. Bless Discord for granting me the strength to continue with supportive and uh... eccentric friends. XD

I've also been discovering a lot more Jason Todd fans IRL, so shout out to you wonderful people! It was so much fun screaming about Jason with you all! ٩(ˊᗜˋ*)و

Edit: DAUM. Thank you all so much!! I'm glad that this made your week, @theaceofarrows! Thanks so much for creating the prompt. Apart from providing me the inspiration to draw, you also got me into better understanding epilepsy. So, thank you! <3

And thank you ALL! You have no idea how much I love reading through your tags. This is legit my new form of therapy. I’m glad that this was received well! You all are amazing. Seriously. Keep thriving, everyone! ( ˊᵕˋ )°♡

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desertwaterwitch · 4 months

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Made a similar post before (I don’t think on this account) but as a reminder:

We, as people with epilepsy, super appreciate when you tag something to let us know there’s flashing lights in it. A huge chunk of us have that seizure trigger. However, what’s important is to tag it this way:

Examples:

tw flashing lights

tw strobe lights

flashing lights

strobe lights

I notice people will tag “epilepsy.” That’s not good, though, because us epileptics regularly search that tag to find things about epilepsy and seizures we relate with. If someone tags the word “epilepsy” when there are flashing lights, we will pass them and possibly go into a seizure. Very dangerous, no matter what type.

For me I filter out those tags now, but coming across them because they’ve been tagged incorrectly, that’s scary.

I want to thank everyone who does tag correctly. You have helped me and others who have epilepsy.

Please pass this on! 💜

#super important #important #epileptic seizures #epilepsy awareness #epilepsy #seizures #seizure disorder #actually epileptic #chronic illness #actually disabled #disabled

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haikyuupaladin · 4 months

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Under The Lights, the short film by Miles Levin about a boy with epilepsy and his experience at prom is going to get a feature length film version if they can hit their crowdfunding goal!

This is one of the biggest attempts at an epilepsy awareness campaign in a while. And the short film was brilliant. They managed to convey the idea of the photosensitive trigger visually in the film without ever actually risking triggering photosensitivity.

If you want to support it, you can do so at the link below:

Link

#epilepsy #actually epileptic #disability #photosensitivity #disability representation #under the lights #epilepsy awareness

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theaceofarrows · 1 year

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I love the headcanon of there being a swear jar in Wayne manor where the money gets donated to charity whenever it's full, but what about Jason swears enough to put a sailor to shame purely for charity reasons? Or, he makes everyone else swear too so they have to pay Example⬇

-

Jason: [kicking in the manor door, and starts throwing 5$ bills at everyone] It's Epilepsy Awareness Month, and you know what that means bitches

Everyone: [resigned sighs]

-

Jason: [purposefully bumps into Tim so he spills his coffee]

Tim: Oh, SHIT-

Jason: [slamming the swear jar down] Pay up, motherfucker

-

[Alfred the cat, sleeping on Jason's jacket]

Jason: Damian, you little bastard, come get your damn cat before they shed all over my fucking jacket!

Damian: [grumbling] Fucking, Todd-

Jason: [already holding the jar] Contribute!

-

Bruce: Jason... I appreciate your enthusiasm, I really do, but maybe you could slow down a bit on the language-

Jason: Bruce, you selfish prick! I'm doing my civic fucking duty! I don't see YOU contributing anything to the damn cause, you rich piese of shit!

Bruce: Jason, please...-

Jason: [slamming the jar into Bruce's chest] Do it. Do you it, you fucking coward

Bruce: [tiredly pulling out a 100$ bill] Fuck...

#incorrect batfamily quotes #jason todd #tim drake #damian wayne #bruce wayne #batfam #the infamous wayne family swear jar #epilepsy awareness #epilepsy awareness month 2022

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sysboxes · 30 days

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[Text; This system wishes all Epileptics a happy epilepsy awareness day!]

happy epilepsy awareness day from the epileptic luxray!!

#endos dni #system #userbox #did #anti endo #osdd #traumagenic system #system stuff #this user #mod luxray🐈‍⬛️⚡️#epilepsy user boxes #epilepsy awareness #epilepsy #this system

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xemnote · 7 months

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I'm so so so happy about this!

#epilepsy awareness #Zach's Law #photosensitive epilepsy #actually epileptic #epilepsy #good news

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thebibliosphere · 1 year

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new flashing lights tumblr ad. It's a video from screamVI2023 I believe, and starts with ghostface on screen for like a second before rapidly flickering lights go off.

Ugh, thank you for the heads up.

(And thank you to the people who gifted me add-free recently so I don't see it.)

#epilepsy awareness #tumblr ads

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thedevilandhisbride · 1 year

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hey reminder to not touch people or move people who are seizing unless you are supporting their head or body to keep them from falling/putting something under their head to prevent injury.

touching or moving seizing people can result in injury and worse seizure activity, or cause more seizures after the one they are currently having.

i had a seizure at my highschool today that lasted 10 minutes give or take. it was very bad. the nurses there, after sending away my friends, kept jostling me around, resulting in a worse seizure to the point my leg and jaw would not stop shaking even after the seizure ‘finished.’ one nurse kept roughly rubbing my sternum and shoulder, and she also moved me to my side and kept moving my legs and arms around into different side resting positions, and at one point threw my hand and it hit me in the face. another nurse had taken my head and put it in her lap, which was weird to me and made me uncomfortable since i am hyperaware of my body during seizures since i am conscious. she also kept saying my deadname over and over again trying to get a response out of me while.. i was seizing… hm. anyways.

those are all things you should not do. let me tell you what my friends did.

one of my friends timed the seizure like i had asked him to before it started, and he stood there watching and timing it. my other friends didnt touch me and they moved around me when the bell rang to go to classes (this was early in the morning, which was an hour ago for me, and it was in the cafeteria). the other friend who stayed hung around and tried to give good information to the nurses who ended up being called over by an assistant principle who came over. they did the right thing. the nurses did not.

my seizure could have been only a couple of minutes, maybe just 6 minutes (5+ minutes being Bad ofc), but no! what those nurses did made it 100x worse, and now i am suffering because of it.

gotta love medical professionals who dont know shit!

#tcccuposting #disability #disabled #ableism #actually disabled #important #seizures #epilepsy awareness #seizure awareness

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glitchdollmemoria · 9 months

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do people who disregard photosensitivity realize that seizures can fucking kill or do they just not care. do people not realize that their "aesthetic" "cool" flashing lights that happen without SUFFICIENT warning... are fucking capable of killing people. i dont even care if i sound pissy right now because i am pissy, im sick of feeling like myself and others with epilepsy arent even afforded the right to be an afterthought to most people. im not even photosensitive but ffs this shit makes me so angry.

seizures themselves can be deadly if they go on too long, theyre essentially electrical overloads in the brain, you know, that organ that controls the entire rest of the body? and seizures can result in injuries or death from falls. from choking on our own vomit. from drowning in our own bathtubs, if we think we might be safe to bathe and then get proven wrong. maybe someone just wanted to watch a video or movie while they took a spa day.

did you know that epileptics are more likely to die younger than those without epilepsy, with all those risks and more? and have you heard of SUDEP? sudden unexpected death in epilepsy, death without a known cause, a rare but very real possibility for us. it kills approximately 1 in 1000 epileptics a year, if not more since it may not be accurately tracked. thats thousands of us dead a year. we do not need you to add to our death rates.

"all these things are known risks, epileptics just have to be more careful-" epileptic people should not have to be on constant fucking high alert. how about instead, people just learn to give a shit about life threatening disabilities? it takes so little effort to just offer a CLEAR and VERY OBVIOUS warning AHEAD OF TIME, for a SIGNIFICANT AMOUNT OF TIME, before your stupid flashing lights. or just dont add them at all. are they necessary? are they really necessary? would you really fucking rather photosensitive epileptics have to be constantly on guard, IMPOSSIBLY on guard, rather than you just considering their safety? nobody can anticipate every instance of unexpected flashing lights they might come across. but you, creators, are able to provide warnings, and if for any reason you arent, then hire someone else to edit the warnings in or just get rid of the fucking lights altogether.

again, my epilepsy is not photosensitive, but i will never stop being protective of my photosensitive siblings. my own life is scary enough with the form of epilepsy i have, i cannot imagine how terrifying it must be to have to maneuver through the world with photosensitivity, and i dont want careless assholes to go killing my fucking community because you dont give enough of a shit to worry epileptic people. i am pissed off and emotionally exhausted and the shit with elon musk having a flashing gif on his twitter account was the straw that broke my back today so youre getting a pissed off PSA. everyone better start doing a whole damn lot better.

link to the CDC page about SUDEP

link to the epilepsy foundation site page about seizure risks

people without epilepsy are encouraged to reblog but know that i am already angry and will not tolerate bullshit on this post. give a fuck about other peoples lives and safety or im blocking you.

#sudep cw #sudep tw #actually epileptic #epilepsy awareness #photosensitivity #photosensitive epilepsy #''im just gonna make a quick bitchy vent post'' proceeds to write paragraphs on paragraphs with citations so im taken seriously lol #anyway. photosensitive epileptics i am kissing you all on the foreheads #everyone please take your meds and stay safe out there #happy last day of disability pride month since thats still happening too. ofc elon pulls this shit now.#disabled #disability #disability pride month #disability awareness #disability pride

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crippledcryptidd · 5 months

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It’s epilepsy awareness month so fellow epileptic i wish you a happy and seizures free November (and the rest of forever)

Also i couldn’t find an epilepsy ask game to rb so if anyone wants to ask any epilepsy questions feel free to send some in asks

#disabled #cpunk #cripple punk #queer cripple #neurological disorder #physically disabled #disability #neurological disability #epilepsy awareness #actually epileptic #epilepsy awareness month

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e-v-i-lb-o-y-s · 11 months

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Dove, Sofia and Booboo with Kenny at the second annual Cameron Boyce Foundation Gala 💜

#descendants #disney descendants #descendants 2 #disney #ig #dove cameron #sofia carson #booboo stewart #kenny ortega #cameron boyce #cameron boyce foundation #gala #red carpet #epilepsy awareness

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brain-buddies · 1 year

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This is a big deal. Elon Musk just fired everyone who can make life easier for people with disabilities, everyone who represents people with disabilities. The people who could save a someone's life.

#epilepsy #epilepsy awareness #seizure disorder #seizures #people with epilepsy #disabilities #people with disabilities #twitter #elon musk #wtf is wrong with people

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emlynphoenix · 1 year

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Only 19 states have the Seizure Safe School Act. Out of 50 states only 19 have mandated seizure first aid requirements.

Epilepsy is the 4th most common neurological disorder. It is treated as if it is rare causing the feeling of loneliness, and being misunderstood. Students and faculty alike cause some of this by not taking the disability seriously. We need to bring this to an end. All 50 states should be on board.

Anyone with a brain can have a seizure 💜

#epilepsy advocate #epilepsy awareness month #epilepsy awareness #epilepsy safety #seizures #seizureschoolsafetyact #epilepsy education #anyonewithabraincanhabeaseizure #invisible disability #disability #disabled #ableism #safe school act #1 in 26 #the reality of people with epilepsy #disabilities #help yourself #educate yourself #educate yourself to help others

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magentasky234 · 1 year

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If you have epilepsy, migraines, or a condition that is affected by flashing lights/flickering images, and want to play Pokémon Scarlet and Violet, please withold from playing for now. The games are very glitchy at the moment, and things are often flickering rapidly on and off screen. Even trees have been flickering rapidly like this.

#pokemon #pokemon scarvi #pokemon scarlet #pokemon violet #epilepsy problems #epilepsy #actually epileptic #epilepsy awareness #migraines #photosensitive epilepsy

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weemstar · 1 month

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I'm about to start a petition for Nintendo to face legal repercussions for updating pay-to-play games with flashing, strobing, or intentionally eye-straining game mechanics or visuals

The Splatterscreen was the first real problem

But the Fizzbangs and the Square are now INEXCUSABLE for the SHEER LEVEL of flashing and strobing

I can even make the same argument for the small flashes that happen when your attacks actually connect and things like the Fizzybomb explosions, but those were so small it wasn't a problem until everything else was added and compounded the problem.

I did not pay over 100 dollars for this game in-full to be UNABLE TO PLAY IT in its final development cycle

Its to the point trying to do so CAN and WILL send me into a seizure and have me end up in the ER for a disability I cannot control, I haven't touched the game all splatfest because it's TOO much

I am FURIOUS that a game that preaches diversity and inclusion has overlooked people like me SO severely MULTIPLE TIMES

I'm fed the fuck up.

#splatoon #splatoon 3 #splatfest #seizure awareness #epilepsy awareness #migraine awareness #chronic illness #disability rights #Nintendo

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