Discover and read the best of Twitter Threads about #epilepsy

Most recents (14)

For people with #epilepsy and other CNS disorders. Came across @SKLifeScience, part of a massive Korean conglomerate. This company is just making its inroads in America, and is *solely* dedicated to CNS, epilepsy treatments. Studies fascinating. Wish them all success.
@SKLifeScience By the way - I have zero relationship with them. Just came across their website yesterday (and it is the coolest website I have ever seen.) And was amazed to read about the meds they have in clinical trials.
@SKLifeScience ...actually, the website. The first 5 seconds or so are incredibly cool.
Read 3 tweets
.@neuralink big reveal thread
3/ #neuralink
threads inserted into brain are very tiny, and robot's needle very tiny too
Read 23 tweets
1. With the death of Cameron Boyce, epilepsy patients and their families are finally hearing what their neurologists refuse to tell them: Epilepsy kills. And there is something you can do about it...…
2....studies show about 20% of doctors tell epilepsy patients and their families about SUDEP (sudden unexpected death in epilepsy) and most of those only because they are asked. Imagine having a disease that could kill you but your doctor won’t tell you. That is what we face...
3....the reasons they don’t tell fall into lots of categories, mostly “I don’t want to scare them” These are our lives. We get to decide. And there are things that might help. If you see someone who has had a seizure and stopped breathing, shake them, slap them, anything to...
Read 6 tweets
1. People without epilepsy aren't getting it. Yes, @netflix put a warning that a special effect in @Stranger_Things can cause a potentially fatal seizure in people with epilepsy. This disease is hard enough for us without being told "Screw you. You also can't watch this show...
@netflix @Stranger_Things 2..."because of your disease." Seriously? Imagine if you couldn't see your favorite show because they put in an effect that they knew could cause an asthma attack. Or diabetic shock. They are LITERALLY putting something in that they KNOW can cause a potentially lethal...
@netflix @Stranger_Things 3...consequence. Little children, excited about seeing The Incredibles 2, received warnings from Epilepsy Foundation that the movie, because of a special effect, could cause seizures. So they couldn't see it. But at LEAST Pixar didn't know. @netflix DID know and...
Read 4 tweets
1. Time to discuss @netflix, and its war on people with #epilepsy. This company will not stop, & it's time for our community of 3.4 million patients and tens of millions of friends and family members to take action: Please, cancel your Netflix account.

Here is what they did:...
@netflix 2...i have been notified that, in the latest season of @Stranger_Things, there is a notification that because of lighting effects, people with photosensitive epilepsy might have seizures. That's right - @netflix, for an effect, is putting people's lives at risk....
@netflix @Stranger_Things 3...what if someone misses the opening? As mentioned with the Cameron Boyce story, epilepsy can kill. Is it REALLY worth a visual effect to potentially kill people? Why not start injecting sugar during episodes, but just warn diabetics not to watch?...
Read 15 tweets
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 tweets
Many people seem unaware of the impact of depression on cognitive function (i.e. thinking abilities).

I discovered this when a few small replies I made recently on someone’s thread garnered a total of a few thousand likes (and still counting).

So, a brief Tweetorial. /1
Impairment of cognition — meaning, impaired ability to think, remember, solve problems, etc. — is quite common in depression, and is a very common cause of cognitive complaints in medical practice overall.

There are two major reasons depression causes cognitive problems. /2
The first is that it makes you slower.

When you’re depressed, everything looks grey, and there’s no hope, so it’s awfully hard to motivate yourself to do things.

That includes thinking about things & solving problems. You might do it eventually, but it’ll take you longer. /3
Read 17 tweets
It builds on the work that Viktor has been developing over the past decade on Structured Flows on Manifolds that provides a general framework to link brain flows and behaviour flows.
The basic idea is that for complex systems like the brain you can express it's dynamics in terms of relatively low-dimensional manifolds that constrain the temporal evolution of network flows.
Read 11 tweets
1. It is time for the #epilepsy community to get mad, to organize, the fight back. We remain the second-most stigmatized people with a disease. (Mental illness is first.) Even with control, we have three times the average unemployment rate. We are driven from schools, we lose...
2...our friends, we are called cruel nicknames. We are afraid to reveal our disease because we know it can easily result in termination or expulsion - "for our own good." The head of HR-Disability for a major corporation told me largest numbers of calls from managers.....
3...about people with disabilities is that they have discovered someone they hired has epilepsy, and asking if they can be fired or at least moved to where customers won't see them. And then...and then there is Hollywood, that thinks we're funny or worth ignoring, as if....
Read 21 tweets
1. Plz RT

This is 80th day Ive tweeted bout @NotreDame driving out kid with #epilepsy. This wont stop til they apologize.

As promised, for this day I will get into new details. But first, plz join 33,000 others in signing petition demanding ND apologize:…
2...for those who don't know the story, this kid was born with epilepsy following an in-utero stroke. He busted his butt to achieve his dream - attending @NotreDame. But his MD said that, to decrease his risk of severe seizures, he needed to stay in a single room. Reason... complex. The doctor wrote to ND and told them the boy could die without this accommodation. ND refused pleas from the family to consult experts - the kid's doctor, the epilepsy foundation, anyone they chose. Instead, said giving the kid a single room to keep him alive...
Read 29 tweets
1. @MarvelStudios needs to fix this. #SpiderManFarFromHome trailer shows @SamuelLJackson telling @TomHolland1996 that his friend could swallow his tongue. This DOES NOT happen, and this myth is directly responsible for many injuries inflicted on people with #epilepsy....
2...all the top references to tongue swallow in search are about epilepsy and how such a thing is impossible. But somehow some ridiculous old wives tale got started decades ago that people swallow tongues in seizures, so you must put a spoon in their mouths. THIS IS DANGEROUS....
3....when someone has convulsions, their jaws crush down tight. If you have a spoon in your mouth, your teeth break. I have met a number of people with epilepsy who required plates and bridges for their teeth in their 20s, because someone stuck a spoon in their mouths to stop...
Read 7 tweets
1. This is 65th day tweeting about @NotreDame driving out a kid with epilepsy. I will not stop until they apologize.

The time has come to explain, why am I doing this? The kid & his family don't want to sue or return 2 ND. So is this about him or more?…
2...the answer is, it's both. It's about this single case of "James," whose life could be severely damaged by this. But it is also about calling attention to the reality for folks with #epilepsy. This happens...All. The. Time. Out of ignorance, people are scared of folks with....
3...epilepsy. Seizures frighten them - they are scared of seeing the lack of control, they are scared of the liability, they are scared. We are driven from elementary school, high school, college, graduate school. We are fired from our jobs. One seizure is all it takes and the...
Read 21 tweets
1. I'm tired of parents showing me photos of their children who died. I'm tired of people telling me about their friends who died. I'm tired of thinking about the kid I mentored who died.

And I'm tired of TV producers saying #epilepsy isn't serious.

No, not tired. Enraged... in 26 people have #epilepsy - more than Parkinsons, MS and autism combined. It kills, it destroys lives. Some, like me, survive. But we live every day knowing that we could die from a condition in epilepsy no MD understands yet called SUDEP.

But it's not serious...
3...movies and TV shows portray horrible, false, harmful, ignorant information about epilepsy for *entertainment.* In UK, some of the worst discrimination against folks with epilepsy is traced to some TV shows that show garbage. In US, @Netflix recently ran a movie so horrific...
Read 13 tweets
1. THIS is why I wrote my book, A Mind Unraveled, about living with intractable #epilepsy. @Netflix has a movie I wont name that has an ignorant & harmful depiction of a boy with epilepsy. @EpilepsyFdn has a statement saying the film "adds to the fear that exist about seizures"..
2...and "harkens back into the Dark Ages" and promote "ignorance and misunderstanding." Goddamit! We are NOT your entertainment, we are NOT freaks, we are NOT scary. We are your friends, your neighbors, sometimes your family. @Netflix: You owe us an apology. Take down the movie..
3...people with epilepsy face enough challenges without you making it worse, @netflix. EVERYONE in the media must learn about this condition before writing or talking about it. What you believe is probably wrong. Go to & read my book about living with this
Read 3 tweets

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