Mysterious Disease Discovered Locally, Strikes Mainly Young Women
Itâs a mysterious, newly discovered disease that strikes mainly young women, and itâs often misdiagnosed. Doctors who discovered it, here in Philadelphia, say itâs like your brain is on fire. 3 On Your Side Health Reporter Stephanie Stahl says it starts with personality changes.
Young women dazed, restrained in hospital beds, acting possessed and then becoming catatonic. Theyâd been so normal, when suddenly their lives went haywire.
âOne minute Iâd be sobbing, crying hysterically, and the next minute Iâd be laughing, said Susannah Cahalan, of New Jersey.
âI was very paranoid and manic. There was something wrong. I thought trucks were following me,â said Emily Gavigan, of Pennsylvania.
And it got worse for Emily Gavigan, who was a sophomore at the University of Scranton. Hospitalized, and out of it, she couldnât control her arm movements. Then there were seizures, and she needed a ventilator. Her parents were watching their only child slip away.
âIt was life and death for weeks,â said Grace Gavigan, Emilyâs mom.
âWe were losing her. This is something that I couldnât control,â said Bill Gavigan, Emilyâs dad.
Doctors also couldnât figure out what was wrong with Susannah.
âI had bizarre abnormal movements, would leave my arms out extended, you know, in front of me. I was a relatively normal person, then the next minute Iâm hallucinating and insisting that my father had kidnapped me,â said Susannah.
Turns out, Susannah and Emily werenât mentally ill. They both had an auto immune disease called Anti-NMDA Receptor Encephalitis, when antibodies attack the brain, causing swelling.
Susannah says this is how doctors explained it to her parents, âHe told them her brain is on fire. He used those words: âHer brain is on fire.ââ
âSomeone once asked, âIf you could take it all back, would you?â
At the time I didnât know. Now I do. I wouldnât take that terrible experience back for anything in the world. Too much light has come out of my darkness.ââ Susannah Cahalan, Brain on Fire: My Month of Madness
I slurred my words. I drooled. I didnât have proper control over my swallowing ⊠I kept my arms out in unnatural poses. At one point, I was like the Bride of Frankenstein â I kept my arms out rigidly. I was slow. I could hardly walk, and when I did, I needed to be supported ⊠I started [acting] very psychotic. I believed that I could age people with my mind. If I looked at them, wrinkles would form, and if I looked away, they would suddenly, magically get younger. And I believed that my father had murdered my stepmother. I believed all these incredibly paranoid â a huge, extreme example of persecution complex. And then as the days went on, I stopped being as psychotic, and I started entering into a catatonic stage, which was characterized by just complete lack of emotion, inability to relate, or to read, or hardly to be able to speak.
(Photo credit: Julie Stapen)
Iâm truly glad sheâs ok. Auto-immune diseases are horrible.
âWhile he may be an excellent doctor in many respects, Dr. Bailey is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. Itâs a bad system. Dr. Bailey is not the exception to the rule. He is the rule. Iâm the one who is an exception. Iâm the one who is lucky. I did not slip through a system that is designed to miss cases just like my own â cases that require time and patience and individual attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasnât the really shocking part; I realize now that my survival, my recovery â my ability to write this book â is the shocking part.â
â Susannah Cahalan in Brain on Fire: My Month of Madness
I just finished watching Brain on Fire. It focuses on how doctors often look for the easy answer instead of putting in the work to diagnose and treat people with physical invisible illnesses. The main character is dismissed ignored despite her having some symptoms that would never be mental illness alone. She and her family had to fight to get the doctors to do their jobs.
I can relate to this and I know plenty of other spoonies can to.
I just remembered yesterday that I saw a neurologist really early into my sickness problems. and he was terrible and made me cry and was really dismissive. Because i didnt have a neurology problem.
Several years later, I went to mayo and got sent all over the building to different doctors, and finally, it was the neurologist who was like âoh you have this neurology problem.â
if that first dickhead had believed me and done his job, I could have been saved years of uncertainty and bad doctors
PSA: You should all go watch âBrain on Fireâ with ChloĂ« Grace Moretz and Richard Armitage on Netflix. It is a fascinating medical drama that raises awareness for autoimmune disease.
As someone with a number of chronic illnesses- this was very important to me. Getting diagnosed with a chronic illness, especially a rare one, is an extremely arduous process. It involves a lot of luck, but more than anything, persistence and self-advocacy. This is exactly what the movie depicts through ChloĂ«âs beautiful performance.
It really helped me to feel like other people understood what Iâve been through and I hope others of you will feel the same đ
But more than anything, I hope it inspires someone who needs help, or is still seeking their true diagnosis, to get what they need.
THIS^
Going through doctor and doctor. People telling you that everything is perfectly fine. That your results came back normal. It really is an awful experience. Especially the fact that people just don’t understand.
âWe are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.âÂ
I just saw the movie this book was based on. And it was really good. Made me aware of a rare autoimmune disease I had never heard of. I could really relate to the fact that the doctors could just not come up with a proper diagnosis. Just sort of being pushed aside, as if you didn’t matter or weren’t important enough. Simply wondering what the hell is wrong with you and if you will ever get better.
Needless to say I highly recommend the movie. Chloe Grace Mortez did an amazing job in this movie. Will definitley read the author’s story and book in the future!
WHERE DOES IT END EDISON
ITâS GOD-DANG NIKOLA TESLA ALL FRIGGIN OVER AGAIN
WHERE DOES IT END EDISON YOU LYING COWARD
WHERE DOES IT END
What you are seeing the oldest surviving film in existence. This film is called âRoundhay Garden Sceneâ and was shot on the single lens motion camera invented by Louis le Prince.Â
The scene shows Louisâs son Adolphe, Louisâs in-laws, Sarah and Jospeh Whitley, and Annie Hartley walking around the Roundhay garden. Sarah Whitley died 10 days after this scene was filmed.Â
 While many credit Edison with inventing the motion camera Le Prince actually invented one first, though he was never credited with the idea as he permits never went through and were lost.Â
Louis le Prince disappeared on September 16, 1880 after getting on a train in Dijon, France. His body nor belongings have never been found and many wonder what happened to who some call âthe father of cinematographyâÂ
You don’t have to reply really! I see lots of conversion students ask for book recommendations for in depth info on Judaism and I want to recommend two! Basic Judaism by Milton Steinberg (Reform) and Jewish Literature by Rabbi Joseph Telushkin(Conservative/Orthodox)! Both go in depth and include everything from philosophy, ethics, history, rituals, holidays, people, literature,etc. Both are over a thousand pages long and are good and informative reference books. Sorry if you know them already!
Book recs!