#the epilepsy foundation

[reindrops927]

To an extent I feel like people who you pay to train service dogs take advantage of you. TO AN ADVANTAGE. Here's why: disabled people already have so many medical bills and if they need a dog its AT LEAST 15K depending on how much time it takes to train them. If you do even a little bit of research you see that these senses are detected naturally in dogs. They can detect a seizure up to 45 minutes before it occurs (there's many different reasons why) so with that being said..... if these senses occur naturally and they only need a certain amount of training then why pay so much? There's agencies out there but its almost like you're taking out a loan for college. Someone educate me.

[smeagles]

The Foundations of Decay live in Philadelphia

[e-v-i-lb-o-y-s]

So much love at the third annual Cam for a Cause Gala 💜

Donate

[my-autism-adhd-blog]

Hi everyone,

Since some of you wanted to see more posts about epilepsy, I thought I would share how autism and epilepsy can co-occur with one another. According to one article:

Different studies have shown that intellectual disability (ID) is the major risk factor for autistic people developing epilepsy. The risk for epilepsy in autistic children without an ID is 8%, increasing to 20% in those with an ID. The risk can be as high as 40% in those with severe intellectual disability. Among autistic children who have IQs above 70, approximately 4% develop epilepsy.

As children with autism reach the teenage years, the risk of developing seizures increases, and continues to increase into young adulthood. Other factors such as gender, regression of language and social function don’t increase the likelihood of an autistic child developing epilepsy.

The link to the article will be below in case anyone is interested in reading it:

I found another helpful source from the Epilepsy Foundation explaining the connection between epilepsy and autism:

Having both of these myself, is definitely a challenge. And I hate taking medication everyday (I’m on four). Around 20-30% of autistic individuals also have epilepsy, which is higher than I thought it would be.

I hope you find this information helpful.

[nerds-yearbook]

With a cover date of January, 1991, Marvel released a one shot in association with the National Association of School Nurses as part of the Epilepsy Foundation of America's campaign "Count Me In". ("Spider-Man Battles the Myth Monster!", Comic, Event)

[theyanderespecialist]

Yandere Dr. Wondertainment X Male Listener With Epilepsy (SCP Foundation)

[bucklemonster2]

GOED NIEUWS omtrent verblindende autolichten! (ENGLISH VERSION BELOW)

GOED NIEUWS omtrent verblindende autolichten! (ENGLISH VERSION BELOW) Ik heb het probleem van verblindende autolichten aangekaart bij verschillende ministers en overheidsorganen. En ik heb goed nieuws gekregen, blijkbaar zijn de regels aangepast sinds April 2023 voor de EU. Dus ik vermoed dat al die verblindende lichten van auto's zijn die "nog achterlopen". En dat ze langzaam zullen verdwijnen, na de volgende autokeuring(?) of als mensen hun auto's vervangen. Nu ja, het probleem blijft nog 'hangen' en ik vraag me af hoe effectief de nieuwe regels zijn, ik kan het pas weten na 5-10 jaar? Daarnaast blijft de problematiek van geluidsoverlast die mensen doen verschieten en grote schermen die mensen, (klanten voetgangers en bestuurders) afleiden en vaak irriteren. De wereld is nog altijd niet meer autisme, epilepsie, hoogsensitief en migrainevriendelijk. Terwijl het vroeger (voor 2021) wel veel rustiger was.

Dit is de email die ik kreeg, naam verwijderd voor privacy:

Beste, Bedankt voor uw interventie. Wat LED-verlichting betreft, houdt onze overheid zich alleen bezig met de verlichting en lichtsignaalvoorzieningen die op voertuigen zijn gemonteerd. Deze technische vereisten zijn grotendeels geharmoniseerd op internationaal en Europees niveau. Als zodanig zijn we betrokken bij het Technisch Comité van de Verenigde Naties (UNECE) voor verlichting en lichtsignaalvoorzieningen. Het probleem van verblinding door LED-lichtbronnen wordt goed in aanmerking genomen in de reglementering voertuigen. De laatste versie van de technische voorschriften die van toepassing zijn op verlichting en lichtsignaalvoorzieningen en die in april 2023 zijn aangenomen, versterken de vereisten op dit gebied en zullen ervoor zorgen dat voertuigen die in de toekomst op de markt worden gebracht efficiënter en minder verblindend zijn. We blijven echter alert op toekomstige technische ontwikkelingen. Met vriendelijke groeten, NAME REDACTED voor de Technische Cel (FOD Mobiliteit en Vervoer) Veuillez s.v.p. conserver le numéro du ticket dans le sujet de votre réponse. Merci. Gelieve a.u.b. het ticketnummer in het onderwerp van uw antwoord te behouden. Bedankt.

----------------------- ----------------------- ENGLISH VERSION: GOOD NEWS about blinding car lights! I have raised the problem of blinding car lights with various ministers and government bodies. And I got some good news, apparently the rules have been changed since April 2023 for the EU. So I'm guessing all those blinding lights are from cars that are "still lacking behind". And that they will slowly disappear, after the next car inspection(?) or when people replace their cars. Well, the problem is still 'hanging' and I wonder how effective the new rules are, I can only know after 5-10 years? In addition, the problem of noise pollution that scares people and large screens that distract and often irritate people (customers, pedestrians and drivers) remains. The world is still no longer autism, epilepsy, highly sensitive and migraine friendly. While it used to be much quieter (before 2021). This is the email I received, name removed for privacy: Greetings, Thank you for your intervention. As far as LED lighting is concerned, our government is only concerned with the lighting and light signaling devices fitted to vehicles. These technical requirements are largely harmonized at international and European level. As such, we are involved with the United Nations Technical Committee (UNECE) on Lighting and Light Signaling Devices. The problem of dazzling door LED light sources is well taken into account in vehicle regulations. The latest version of the technical regulations applicable to lighting and light signaling devices, which will be adopted in April 2023, strengthen the requirements in this area and will ensure that vehicles placed on the market in the future are effective and less dazzling. However, we remain alert to future technical developments. Kind regards, NAME REDACTED for the Technical Unit (FPS Mobility and Transport) Veuillez please save the number of tickets when you get your answer. Thanks. applications please keep the ticket number in the subject of your reply. Thank you.

[kaitheotakuartist]

My Friend @l8rg8r2u 's Charity Livestream is now LIVE!! It's gonna be really fun, we're playing video games all day today and tomorrow! I'll be in the Among Us and Mario Party segments, which start at 6PM EST! All donations will go towards the Epilepsy Foundation, in honor of his sister who recently passed - There will be fun donation incentives during the stream so look out for those! https://www.youtube.com/watch?v=L8wk53znvgs

[mariasanfeliu]

Changing my epilepsy story

I submitted my story for the Epilepsy Foundation last week. I was going to wait until they shared it on their website and Facebook but, since that hasn’t happened yet, I guess I’ll have to post it myself: I didn’t understand what they were telling me when my family told me I had epilepsy. How? I didn’t remember having any seizures, but then again, I didn’t remember much at that time. That was…

[lynnwriting]

WOMS: A Perfect Equation

This week's #bookreview is Elizabeth Everett's A Perfect Equation. Short version: if you're a sucker for the enemies to lovers trope, then this is the romance for you! A great resource to raise #epilepsyawareness, too, click to read how here! #amreading

Please note: this post may contain affiliate links for products I recommend. If you make a purchase through these links, at no additional cost to you, I will earn a small commission. As an Amazon Associate I earn from qualifying purchases. It’s time to review what I’ve read lately, and this week it’s the next book in Elizabeth Everett’s The Secret Scientists of London series, A Perfect…

[kunaigirl]

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.

[reindrops927]

Hey! I started a new youtube series called "From an Epileptic Stand Point" simply because I meet people everyday who have questions on epilepsy, how to manage them and disabilities in general. I can't speak for everyone but I know I can speak for a few certain people. My case is very unique and at one point I'd like to share my story :) here's my channel

[3liza]

a lot of people INCLUDING DOCTORS are completely unaware of this but it's not that uncommon for people to get so stressed out they will have a seizure, without being epileptic.

these people can experience any of the symptoms of seizure but will get a negative result on the standard epilepsy tests. this is the epilepsy foundation website and is not a bullshit website, this is actual epilepsy experts and advocates saying "you can have seizures from being too sad, too traumatized, or too stressed". unfortunately a lot of doctors will hear a patient report this, test them for epilepsy, and when the tests are negative, stop the diagnostic process there because they just don't know what else it could be or how to help their patient. bad doctors will make a mental note than the patient is hysterical* and/or malingering. terrible doctors will start diagnosing them with personality disorders that will prevent the patient from receiving adequate care later on (histrionic personality disorder, borderline, bipolar, etc). well, it can just be stress and trauma.

but it's pretty simple, sometimes even non-epileptic brains can overload and boil over and trigger cataplexy, muscle spasms, absence episodes, hallucinations, and all the rest of the seizure behaviors. one of the papers I read on Psychogenic Non-epileptic Seizure (lmao PNES) mentioned that diagnosis alone was sufficient to significantly reduce or completely cure a lot of cases, presumably because if you know what's happening to you in a psychogenic illness and why, a huge burden of fear and stress is lifted from the disease process. unfortunately the combination of all these factors (tests negative for epilepsy, caused by psychological stress, resolves when diagnosed) produces an impression of the patient "faking it". this is true of most psychogenic illness because our culture doesn't consider the processes of the brain to be "real", but again, I have to emphasize, this is the official epilepsy foundation website and they have no reason to blow smoke up anyone's ass about this

* they're technically correct, hysteria as a classical diagnosis before it got turned into "she's making it up" documented a lot of these same symptoms, including the "hysterical arch" posture of a patient experiencing a full body spasm seen sometimes in stress seizures

[e-v-i-lb-o-y-s]

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

[vegan-nom-noms]

Vegan Blueberry Cheesecake Bars

March is Epilepsy Awareness Month!

My niece was diagnosed with epilepsy at just 5 months old. It's estimated that 65 MILLION people have it around the world.

If you can please donate to your favourite Epilepsy charity or research foundation. Mine is Epilepsy Action Australia.

[idontwikeit]

@iwtvfanevents prompt 31: Haunted House

(Flash and epilepsy warning)

What happens to a house when it is left alone?

When it becomes worn and aged, and its paint peels, and its foundations begin to sink. It goes for too long unlived in. What does it think of? What does it dream?

How does it regard those creatures who built it? Who brought it into existence only to abandon it when its usefulness no longer satisfies them.

It may grow lonesome. It may stare for long hours into the darkness of its own empty halls and see shadows. And its heart may jump as it thinks "here, here is someone again, I am not alone."

Each time it is wrong. And the hurt starts over.

It may haunt itself, inventing ghosts to walk its floors, making friends with its shadow puppets, laughing and whispering to itself at the end of some quiet cul-de-sac.

It may grow angry. Its basement may fill with churning acid like an empty stomach. And its gorge may rise as it asks itself, through clenched teeth, "what did I do wrong?"

It may grow bitter. It may grow hungry. So hungry and so bitter that its scruples dissolve and its doors unlock themselves.

While a house may hunger, it cannot starve. And so in fever and anger and loneliness, it may simply lie in wait. Doors open. Shades drawn. Hallways empty. Hungry.

(Anatomy, Kitty Horrorshow, 2016)

Part 1: Dubai

[Youtube]

Play House