#tw SUDEP

[glitchdollmemoria]

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.

[halfmouse]

Been watching the Descendants movies and I think this is really good what they did here. For those who don’t know, Carlos DeVil was played by Cameron Boyce, who died of SUDEP sometime after filming Descendants 3. When they made Descendants: The Rise of Red, they didn’t recast Carlos, instead they had Carlos die between the movies, too. And this picture (captured by having both an iPhone and an iPad) shows that the characters still remember Carlos, just as Cameron Boyce’s castmates remember him.

I don’t want to spoil anything for those who have yet to see the movie but there is conversation around this picture that is important to the plot, and it’s really sweet. It reminds me of what they did with Doc Hudson in Cars 2 and 3, or what Sesame Street did with Mr. Hooper. Sometimes, re-casting a character whose actor or actress died is not right, and I am glad when those in charge realize that.

[iianetwork]

TW//Death June is the awareness month for Dravet Syndrome. Dravet Syndrome is type of developmental epileptic encephalopathy, a group of severe epilepsies with significant developmental delays. Seizures in Dravet Syndrome usually begin in the first 2-15 months of life. These seizures are often frequent and prolonged. Dravet Syndrome is rare with an estimated 1 in 15,700 people. Comorbidities of Dravet syndrome include Autism Spectrum Disorder, ADHD, ataxia, and Dysautonomia. Partially due to limited treatment, there is an estimated mortality rate of 15-20% among people with Dravet Syndrome due to SUDEP (Sudden Unexpected Death in Epilepsy), prolong seizures, and seizure related accidents. [Image Description: Purple background with black text that is titled "Dravet Syndrome". Below reads "Dravet Syndrome is a rare epilepsy syndrome that begins in infancy or early childhood. A majority of the time is cause by a genetic mutation. Symptoms may include: frequent and prolonged seizures, behavioral delay, movement and balance issues, delayed speech, growth and nutrition issues.]

[writersmorgue]

Any thoughts/words of wisdom on a nonepileptic author writing an epileptic character? Things to remember, things to avoid, things you personally wish there was more of?

oh sure! a few things come to mind.

-accurate treatment methods (or if they're not accurate some sort of plot point to explain what they did wrong.) a good angst tool, but it bothers me when seizures are not handled correctly, and then it's never addressed (correct handling here)

-THERE ARE DIFFERENT TYPES OF SEIZURES. there are the (almost cliche) jerking-vomit-pass-out seizures, yes, but also seizures that look like the person is spaced out, or only cause tiny twitches. they're definitely not all hospital trip worthy or concussion-causing.

-it's not a big deal. epilepsy isn't always a debilitating condition. Of course, it CAN BE. and i'm not downplaying the cases where it is. Epilepsy and seizure disorders are dangerous. BUT there are still cases where it's not as prevalent in one's life. for example, i can drive. I have a license, and my epilepsy doesn't affect me as much now that I'm medicated. but i do still have to have blood tests done bi-monthly to make sure i'm taking it.

-AURAS!!!!!! especially if the fic is first person pov of the epileptic character. auras can range from mental to physical, and take place just before a seizure typically (they're actually seizures themselves). A common example, and the one I get, is a feeling of severe deja vu. I'll be in a scenario i KNOW I've never ever been in before, but my head will be pounding with the feeling that this has happened you've been here before you know this place you've done this it's actually kinda scary. But yeah. There are other kinds, too, like weird smells or tingling. They're really interesting and a big part of having a seizure disorder for a lot of people.

some good seizure angst prompts:

-missed dose of medicine

-seizure while swimming or taking a bath

-seizure after strenuous or prolonged physical activity

-seizure from sleep deprivation

-character B witnessing character A have a seizure for the first time

-SUDEP , character A wakes up and character B is dead with no warning

Hope this helps :)

[camscendants]

So another post about Cameron. I know I made one recently but today is different. It’s been six months. Six whole months. Half of a year and it’s only going to get further and further away. I can 100% guarantee that not a momment has gone by where he wasn’t remotely on my mind. I’ve said this before and I’ll say it again I really wish I had appreciated him more when he was alive. I wish I payed more attention and enjoyed his presence and posts more than I did. Now sometimes I’ll be on Instagram and see Dove, Sofia, BooBoo, Karan, victor and everyone else he was so close with with new posts and stories and just see his exactly the same as it was six months ago. No new posts or seeing him leave funny comments in the others comment sections. Ive definitely felt different since he passed like I’ve been sad and grieving but I’ve also just felt some sort of spark of inspiration. I’ve felt more creativity since then, and I really want to try to help people like he did. Like that plan i made to make buttons to sell at my school and donate the money to his foundations I’m still working on getting permission from everyone I need permission from to be able to do it. And I can’t wait to do it. But back to him even though it’s been half a year it still doesn’t feel real. Not at all. Like it still feels like I’ll see him post something saying how he’s working on something new or helping people or just being his goofy self. It also just doesn’t feel right for him to not be here it feels wrong when I see him and think how he passed again I’ve said it before but it feels like a lie my mind just doesn’t comprehend it. It just won’t accept it. Though I know it’s true it just feels bad. There are very very very few people in this world where if you think of them you can’t really find anything bad and even less where the longer you think the better they are. Cam was one of those few. At a quick glance he was talented and sweet but the more you look he just doesn’t seem real. He was beyond talented amazing at so many things. He meant so much to so many people. All of the stories people have of meeting him and him just being the friendliest person they’ve ever met. Heck he meant to world to an Insane amount of people who never even got to meet him. He helped so many people and touched so many lives. He always wanted to do good and make an impact and that’s what he did. He did more in his short 20 years of life than some people are able to do in a lifetime. He always wanted to inspire people to help and just make people happy. And that’s what he did. And though I know him leaving has hurt many many people. He also left so much. he’s inspired people. And knows that we will help bring the change he was working on creating In this world. And I know he is so proud of us for continuing on and helping.

I love you cameron and you will never leave my mind.

[xeno-aligned]

PLEASE LISTEN TO ME! The flags that are pictured above are a HEALTH HAZARD because there are very saturated neon colours next to black. These flags can cause seizures for epileptics. Please please pleaseeee avoid making flags like these because once you look at them long enough it creates an optical illusion that they are moving as if they were flashing strobe lights. People with epilepsy can die from their seizures due to SUDEP (sudden unexpected death due to epilepsy). It doesn't happen to everyone but it's risk we shouldn't have to take to browse tumblr

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thank you for your warning! perhaps a good idea would be to contact the makers of the flags and ask them to edit them?

i’ll make sure i don’t make any flags like this in the future!

[clowwnsoup]

me thinking about SUDEP:

[thetwitchylife]

Aging: Better than the alternative!

I’m turning 30 this year, and apparently it’s a big deal.  People find out that I’m coming on the big thirty and expect horror or dread on my part, and I’m like- no!  I can’t wait!

First, because the women who inspire are almost all older- as are many of the women I choose to spend time with.  Why wouldn’t I want to be more like them? They’re amazing!

Second- When I got stuck with the diagnosis of epilepsy, and as it progressed from “maybe it’ll go away” to “definitely here to stay, you’ll never drive, also it’s meds from now until death,” I got kinda freaked out.  Also SUDEP and realizing that I checked off several of those risk factors... it started me thinking.

So I wondered, at 21, 22, how long my life was going to be.  Which birthdays I would be seeing, and which I wouldn’t. 30? 40? 60? I wrote a will- just in case.

So turning thirty is a good thing!  It’s another year that I’m alive.

[puffle-fuzz]

I am not photosensitive either, but I whole heartedly agree. Back in high school it was a gamble to figure out what triggered my seizures and when kids would aim strobe lights at me, I’d get so pissed off. It almost got me suspended but I was talked down. Fuck those people.

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.