Susannah Cahalan at TEDxAmsterdamWomen 2013
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- เผยแพร่เมื่อ 6 ธ.ค. 2013
- "Lucky" is how Susanna describes the fact that she is here, today, with us at TEDxAmsWomen. She remembers all the people who suffered the same before 2007, the year that the diagnosis was given a name. "Lucky" that this happened to her only 2 years after that, which meant she wasn't put in a mental institution.
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The Doctor who saved her life is a Syrian and he had saved many lives since then , there are a lot of special doctors and special Engineers and creative people in Syria, now it's your turn to save them , to save Syria
The Dr. that recently made the correct diagnosis for a friend of mine was also Syrian.
Took 3 weeks and 4 Dr's. to get it identified. IVIG, Steroids, and Seroquel and he seems to be recovering at 64 years of age. He had seizure 2 weeks after having a shunt placed.
Then the AE set in with the same symptoms described here.
👏🏽👏🏽👏🏽💖 well said!
Only problem, americans aren´t very welcome when they try.
The best doctor unfortunately Syria is going through a lot :/ anyways best movie and happy to gain information about this disease !
@@jimbosammy4255 my mom has this I know doctors don't know anything I'm seeing them in morning it came so sudden she is 75 she just had a seizure the other day been to hospital 4 times this month
I feel like there are probably so many other “rare” deseases like this that aren’t actually that rare but just misdiagnosed... insane
Agreed, many are and have been shut away I'm sure sadly. Watch The Awakenings to know that.
But aren't they misdiagnosed bc they are rarely seen? (And the doctors don't do enough homework.)
Brain on fire tells her story very well as well, love that movie.
My son was misdiagnosed with severe autism at age 2. At age 6, we found out through the Cunningham Panel of Tests that he actually has a presentation of Autoimmune Encephalitis and we are finally getting him back. Years without proper treatment is something really sad. Poor little angel.
I hope your son is getting better now.
@@Thefunksoulbro The gift that made my son able to speak? That wouldn't let him potty train? Unable to socialize? Sorry, sir. That's not a gift. Wake up.
@@shellybelly2075 Stevie wonder views being blind as a gift..Sorry if I offered.
@@Thefunksoulbro I guess Steve Wonder could see it as a gift because he was self sufficient. My son depends on me for his survival.
Can you tell me what you have done to get your son back? I'm losing my daughter....🥲
We are currently living this nightmare with our 14 year old granddaughter. Thank you Susannah for speaking out & giving Anti NMDA Receptor Encephalitis a face!
My sisters currently fighting with this disease and we fought very hard to get the doctors to do all the testing they could, they were literally going to write it off as a mental illness. So lucky they caught it in time
You really have to advocate sometimes with these doctors.
read her book couldn't put it down, she's a trooper what an amazing person!
Oh my god! I loved the book too! I couldnt take my eyes off it!
The name of book
@@bffforlifeandafterlife8764 Brain on fire
Just brilliant writing..
Damn! Good thing she's a journalist, being compelling helps spread the message!
lol good point!
We need more investigations about rare diseases. There’s lot of people out there who also need a right diagnosis or even a cure.
The happy end stories always happen when a good guy steps in in the right time. Best wishes Susannah🙏🏻🙌🏼💐
She’s amazing I just watch brain on fire movie today
I wouldnt calI myself a survivor, more surviving anti-NMDA receptor encephalitis. I was misdiagnosed twice but finally five years ago on my third 'turn' they knew what to look for and had the right treatment. No cause has ever been explained for my relapses, so i'm only waiting if it happens again, as having it once is bad but if i've had it three times, there is a great possibilty i could have it again. I have gone at nearly 10 years between each episode prior but knowing warning signs help me to know if my mood is about to change to seek medical advise asap. What Susannah was talking about the hallucinations and thoughts entering your head is so familiar, it was so confusing and scary it is hard for some to imagine. Her book is a great read. More power to her for giving encephalitis sufferers recognition!
I had this last year and thankfully recovered. Was crazy to read your book and sse all the parallels, thank you Susannah
I've been a schizophrenic for 30 years and I understand her fear. It's nice to see one of us recover with medical intervention.
Yes, but she isn’t schizophrenic.
Her story is amazing. The things that can go wrong with the brain. It is a very scary thought to know that you are a normal and healthy individual one minute and then descending in to madness because of the malfunctions being caused in the brain by the disease. Really a fine line there. I just watched brain on fire and it's what brought me here. Susanna is an amazing woman. A true fighter.
It's incredibly scary
Same here
God Bless doctor Nejjar and all doctors and nurses. I pray that every doctor can give a certain diagnosis in each mental case.👏🏻👏🏻🙏🏻
شكرا د سهيل النجار وانت اشكر الله الذي اعطاك العلم ونبهك على التشخيص الصحيح ل سوزانا
Greetings from Poland to Susannah and Dr. Najjar 😊💗💞
She is gorgeous, amazing lady and doing something positive with her illness and sharing her story and helping others ;)
The amazing person is Dr Souhel Najjar, without him she'd still be zombie like.
@@sannytizer7772 what is wrong with you they can't be both amazing? It's no competition you're weird
Dr. Najjar is a genius.
He was simply willing to listen and search for answers. Too many doctors pull from their bag of tricks and when they come up empty, they stop there. A true medical detective is absolutely priceless.
Thank you Dr Nejjar for .the diagnosis of the disease
From Syria may God bless her
My bestfriend had viral encephalitis a few months back and she was incredibly lucky to have been diagnosed early on. She got the treatments she needed and now she is finally on the right track for recovery. When i met her for the first time after she came from the hospital, I couldn't believe that it was her. She couldn't talk or move without someone's help. For weeks she was just in that confused state where she didn't remember minor details like who was our history teacher in 10th grade (she got the disease when she was 17) She would randomly get paranoid and tell me that she was scared. it scared and confused me to see her like that but slowly she improved and now she is almost the person she was used to be and I believe she is getting better everyday. I'm just so glad she got the treatment she needed at the right time. I do believe that more awareness should be made about this disease and how easily it can be misunderstood.
Thankyou for this TedTalk!!!
Its very sad that good doctors today are rare, and you can't really trust modern medicine that became just a big business that selling people "treatment", rather than actually concentrating on individual problems and treatment,
but luckily there is still ethical and professional doctors like najjar that saved your life.
god bless all the real doctors that doing their job to save people's lifes
Yes yes yes.
All Syrians are proud of you Dr. Najjar 🇸🇾🇸🇾🇸🇾
اشكري الله بعث اليكي الدكتور سهيل النجار وانقذكي بفظل الله جعله سبب
I cant even imagine how tough this must have been
Some of us don't have to imagine.
2024 ..late but its better to be aware now.. GOD BLESS SUSSANAH
Thank you Susannah.
Read her book amazing
I love the book too!
Just watched Brain on Fire on Netflix and landed on this video. She is a revolution in the field of neurological studies. Thanks to Dr Najjar also and Dr Khan who approached Dr Najjar.
More power to you Susanah
Im listening to the audio book now...heart breaking...
Thanks for sharing your experience!
Thank you for sharing this with us
I’ve watched the movie sooo many times. It’s so interesting.
Watched Brain on Fire yesturday. I will never forgot her story.
What an amazing lady
I wish there was more understanding on this disease AND also holistic/integrative doctors working with "normal" doctors; I am sorry for my English, I am neurolyme affected.
It really gives me knowledge thanks to Susanah for sharing her story
Your book is worth to read Susanna. Thanks for putting all of ur struggles in this tiny book which has every word describing the full story of that moment. You are so strong, more power to you. ❤️❤️
Congrats on her recovery! Science is such an amazing thing.
It is along word but we now say it so easily as we are living with a daughter with it I’m praying to god in heaven she recovers
I am leaving this comment as I am sitting outside of the of our neurologist's vet office while my mini dachshund is getting her chemo treatment. I wish I could personally thank the doctor, the sweet girl whom went through this and her family for sticking by her. Our dog has made it to the age of five because of them! She has been fighting for a long time! We thought she had a stroke after her 4th birthday. We watched her start to have symptoms months before. Our normal Veterinarian kept thinking it was different things. After her not being able to hold food down for a long time. She was emaciated and we had to take her to an big city emergency vet because our appointment was not for another couple of weeks. She wouldn't' have made it. She stayed there for a week on IVs for fluids to keep her going and had to have a feeding tube put in her neck. They did extensive testing. Then they explained what was happening, we knew it would be a long road. A week ago I heard about her book and watched the movie 2 days ago. I cried seeing what she went through and she couldn't communicate what she was going through to us being an animal. She is an amazing girl! A fighter and we are her soldiers fighting every step of the way with her. 💪 We are not done yet. She won't be the same before but she is alive and doing so much better. I wish I could pin medals on everyone's chest that has led the way for this disease and tell them how much I love them. Without all of them she would not have made it this far. 😘
Thank Dr. Najjar the one who helped you instead of mention his name twice her , you are really lucky
Souhel Najjar is great doctor with great mind and heart
HOW FORTUNATE IS SUSANNAH, AND SO NICE OF HER TO HAVE THIS VIDEO TO SHARE WITH OTHERS. IT IS SO TRUE EVERYTHING SHE SAYS ABOUT THE DOCTOR WHO SAW HER, AND HOW UNFORTUNATE MAY HAVE BEEN OTHER PEOPLE WHO CAN FIND THE ANSWER TO THAT DISEASE OR DID NOT GET THE RIGHT HELP BECAUSE KNOWLEDGE ABOUT SUCH DISEASE WAS NOT DISCOVERED. HOW THING THAT SHE FAILS TO MENTION IS THE NAME OF THE "DOCTOR" THAT HELPED HER. WHAT IS THE NAME OF THE DOCTOR.?
Dr. Souhel Najjar
Dr is named at point 6.28 in this presentation.
Chill a bit dude
Watching this because I have to read the book for school
Wow! What school? I think every immunologist, neurologist, psychiatrist, and psychologist should read her story as a part of their training.
Thank you Susannah, for telling us about this.
Where can I find more information about how to contract and find therapy for encephalitis?
Guess I will have too listen to her book via audiobook now... Seen the film!
Well, it's good that you're doing something about it. Maybe your story will help others. It was a creative way to diagnosis.
My daughter has this and is still in hospital today June 16 th 2022 I’m looking to see how long roughly after plasma exchange and rituximab Her confusion stops Ashe is now going back to the angry punching stage again it seems to be always wanting to eat as her short memory is lost and thinks she is starving very very painfu to watch this
Great speech! What a happy ending! There are people in nursing homes and psychiatric hospitals that probably have this disease! I wonder if this is the same as PANDAS! People with this disease have symptoms like seizures, fits of rage, and other seemingly psychiatric symptoms! Very similar to this disease! Before having PANDAS you can contract it from strep throat! It's very interesting! Maybe there's a connection to both diseases! Well thanks for sharing your story! God bless you!
Yes....PANDAS is for pediatric patients who are afflicted by strep. PANS is for pediatric patients afflicted by other bacteria, viruses, fungus, or parasite.
I think it's great that she tells her story to spread awareness of this rare disease (!), but I think it's problematic that she never mentions that even mental illness can be treated. And that it is not the end of the world if someone suffers from it. Of course, the diagnosis of suffering from mental illness is absolutely devastating, but by emphasizing the fact that fortunately she wasn't "insane", she helps stigmatize mental illness.
I agree. And worse to me is the assumption that a mental illness diagnosis is a medical diagnosis. It isn't. It's a diagnosis of symptoms with no known root causes. Indeed she absolutely had schizoaffective disorder because she fully met the criteria. What separates her from others is only that the root cause was uncovered and treated correctly.
I don’t think that was her intention.
I just watched the movie did a little research on her and ya it's really nice that she shared her story and it can help others but the symptoms showed and everything i have gone through it all i have had multiple MRIs , blood drawn and a lot of other medical procedures that take toll on your body and i am diagnosed with Schizoaffective disorder. But because these are so stigmatized i had to go through all those medical procedures cause no one wants to believe it. We aren't insane even mental illness is a disease in itself there are scientific researches that show there are hormone level problems or genetics that cause it.
I just felt understanding she is coming from a pov of increasing awareness of this rare disorder but at the same time she is stigmatizing mental health and cronic illnesses like schizophrenia.
I would love to meet Susannah
I just got done watching the movie, it was great. I would also would like to meet her as well.
I have watched the movie like 5 times
This has nothing to do with LUCK! This is a miracle!
my clock is 3/4's full but i'm still fighting. haven't found a doc yet. but i'm fighting
My daughter first symptom was she was fainting then seeing as she explained in early days matrix like motions her phone tv people then seizures non epileptic ones migraines mumbling nonsense on and of then psychotic lots things we kept getting wrong diagnoses we had never ever heard of this disease they eventually realised she had a teretoma tumour on her ovary has been removed So painful and cruel disease she was a nurse and loved her job worked through covid and this is what was around the corner for her horrific disease
What would cause the lateralization of symptoms? Based on the story it almost seems as if her right side was impacted more than her left but I would assume NMDA-R concentrations are similar bilaterally
😢 Almost same wait me here in Cyprus!
Draw a clock best way to fast diagnose the brain.
Barberman not always. Actually most of the time the clock drawing technique is normal even if their is something wrong
@@hannahleonaroberts Good point. But at least in this case he pulled out a simple test, and as luck wld have it, he struck gold, allowing him to proceed down the path of proving what he suspected, to rule it in or out. Lord knows she had probably been poked and prodded enough. But your point is very much worth noting. ✌👍
Dear Susannah,
There are many types of encephalopathy.
Because your condition manifested as psychosis, you did have a psychiatric disorder. “Psychosis Due to General Medical Conditions” is a diagnosis in the DSM5.
It is a travesty of justice that mental health advocates from NAMI continue to reject Best Practice Assessment of psychosis and allow patients suffering from encephalopathy to be labeled "mentally ill" and treated with a blanket pharmaceutical approach, all while receiving financial support from the pharmaceutical industry.
Thank you for helping to call attention to this wide-scale flaw in our mental health care system.
there are different variations of encephalopathy, that's true, but in her book she spelled it 'encephalitis', which is actually more specific. Encephalitis is simply inflammation of the brain, but encephalopathy is a more general term that describes like any change in the brain function/structure (like damage or disease)
@@aubreyphillips6601 Hello. Is there a way to find out more about this illness? Ever since I saw the film Brain on Fire, I have been curious about it and would like to know more about it. Thank you.
@@sarahnichols4439 the book brain on fire is WAY more informative than the movie. for example, in the movie her brain healed quicker than her body, whereas it's the opposite in the book. it's more accurate information
I think this is what my mom has doctors are clueless I'm going there soon I know my dad had this he passed in ,2014 he was in a home many years before this was ever discovered imagine how many have suffered
Nhs wouldnt have picked that up. If it were in sunderland uk, shed have been straight in a mental unit!
Thankgod she is ok now. Beautiful woman too x
I was thinking that! If there was a bed or funding
Yeah your right, the NHS sucks!!
The NHS actually diagnosed me correctly after ruling out other reasons for my illness
First of all: I am so touched by her story and truly think she is blessed with her recovery.
Some say it wont be able that is was a sign from God, but she wasn't put through this, you couldn't hear this story she is telling right here, which means that so many people won't get informed about this disease which is the reason that so many people suffer for nothing actually. If this didn't happen to her, many people wouldn't be alive right now. It was a sign from God to save people and if u don't wanna believe it it's fine thats your choice i can't force you to. God wouldn't do something to someone without knowing that they wouldn't be able to be handle it. 😄 Even if you think that it has nothing to do with God, you know that everything has a reason and for her, it was to be able to tell us her story.
Well said
Hi I have this, but they have actually discovered more just recently, like the cause and dna chain reaction that occurs. It’s called CIRS, and is a biotoxin disease.
Very similar has happened to me too... I was very fearful all of the time and wanted to kill myself even in front of the family few times and in the hospital. I am still having PTSD from the psychiatry gard they have put me in for 2 weeks and after the hospital I still had nightmares and few times I was waking in the middle of the night or couldn't sleep alone. I hope it will get better. I had lost my job too and my boss was like Susanna's pretty harsh in the end and didn't care about the illness really.
you have to thank God for sending Dr. Ennajar to save you.
Strep infections can also cause autoimmune encephalitis.
Susannah please think about the autistic children and adults. They go through things like this, but since they can't describe so eloquently and since they have a label attached to them, they continue to suffer. Wonder whether autism , at least some cases, have similar etiology and similar lines of thinking could help
My son is a case of autism misdiagnosis. Finally getting him back with autoimmune encephalitis treatment. Years of untreated AE. So sad.
She has a chapter about in her book about the misdiagnosed (or undiagnosed) people actually. A lot of people reached out to her and told their stories. She also mentions how she had PTSD and felt guilty for surviving.
@@nurnknknkknk where is her story about this?
@@horselover7216 in her book
Depression is also linked to high levels of cytokines (inflammatory markers) also. So, yes, this is very important to better understanding mental health.
That’s what worries me 80%recoverd xxx
MOST PEOPLE HAVE NO ' idea ' who are in illusion .... it is also called ' EXISTENTIAL CRISES ' !!!!!!
MAINLY OLD SOULS GO THROUGH THAT EXPERIENCE ------- IT IS ALSO A CULMINATION OF ALL OF THEIR LIFETIMES !
NOVA*
Having schizophrenia is not being insane
I didn't hear her thanking Dr najjar in any of her interviews, she said
Wow, I wonder if he was Dr Smith?
Stop looking for a reason to be mad when there is none
I watched the movie brain on fire
Question, how did she got that disease? From where? I think she didn't discuss that thing
It's an autoimune desease, the own body produces, watch the atual movie “brain on fire” , it's her history!
Joie, in case you are still curious, I recently underwent my own battle with Anti-NMDA Receptor Autoimmune Encephalitis. While I'm still making my way through Susannah's book, in my case there was no known source and the best guess my doctors had was that I contracted a virus that could have been dormant from a year ago, from my time in school, or something I picked up a month prior to my hospitalization during my summer break. Often, however, the cause can be a tumor in the body or for young women, a growth in the ovaries.
no read the book lol the movie sucks
or you could read the book
na g the book is supposed to be worse
اريد ترجمة حرفية او كتابة ما تقوله على الأقل
اشتري جهاز ترجمه
My mom was doing the same pulling iv attacking nurse
Increase in auto immune diseases in our society.
I know. And some incredibly unlucky souls get slammed with more than one! I know someone who's got two or three.
That's not luck, you were blessed
Spellcaster86 First off, premature birth has nothing to do with this, Second just because there’s premature deaths doesn’t mean your not blessed maybe God want you up and heaven and not in this cruel horrible, wreak of a world we’re living in. Have BLESSED DAY AND MAY GOD HIMSELF GIVE YOU MANY BLESSINGS. 😊
Was she 'blessed' when she was afflicted in the first place?
it is CALLED : ' DARK NIGHT OF THE SOUL* / PAST LIFETIMES RE-TRIGGERED / MULTIDIMENSIONALITY / ENTERING DIFFERENT DIMENSIONS AND TIMELINES / MOOD SWINGS / MANY PERSONALITIES IN MANY INCARNATIONS , PERSECUTION , MANY LIFETIMES WHEN WE WERE KILLED ... SO, PARANOIA ' IS RESURFACING BIG TIME !!!!
NOVA*
What I find frustrating is that she doesn't seem to make the connection that Schizophrenia is not any more a "mental illness" than what she was suffering from. The only difference is that she was lucky enough to find the root cause of her brain issues. Isn't a "psychiatric case" just a disorder affecting the brain that we don't see? Maybe if we stopped refering to them as having a "psychiatric" condition as though that is an answer to their problems, perhaps we would find ways to bring them back to reality.
Susanna can you help me please please please please
Are you okay?
Like you say we knew something was not right my other daughter faught so hard to tell them she is not insane something isn’t right and she won. She got them too look further. But like you say she would say things like am I going to die and I am rich I killed a Baby which of course she never did was seeing spiders and spirits was so sad never new us she also always at the beginning put her hands out and clinching her hands we gave her a squished she would squeeze it and then rip it up and then say why did I do that or say why is no one helping me
Why do you get information in the brain in first place? Autoimune doesnt happen overnight..
It's a wonder she never was transferred long term to the psychiatric unit. It's good they recognized that she wad not truly mentally ill, and kept her in the normal hospital treatment areas.
I have auto immune encephalitis
I had autoimmune encephalities 5 yrs back.. now I 'm fine.. life going good..thanking god ....returned to studies
now doing postgraduation studies..
Whene u were sick u Saw ur future .. now you are on news!...
Luck didn't save you...
Actually she was quite lucky. Most people with a mental illness are medicated and then the quest for.answers stops. Yes, the doctor saved her, but she was very lucky that he bothered. I suspect that had she been poor, she would have died from.this illness.
Jesus saved you .. not luck .. Jesus!
Not luck ¬ Jesus ...scenes scenes!
luck didn´t save her..to GOD belong the glory
Follower of The Way right! That's the only thing I didn't like about this speech is that she said that luck saved her. There's no such thing as luck
Science and doctors saved her...
totally agree!!
Proper tools and diagnosis from Doctors saved her
I mean it is luck. Not so many people are lucky to have support to push and push and push for proper diagnosis. They were about to ship her off to a psychiatric hospital and slap a label of schizophrenia on her. She is lucky.