What happens when you have a disease doctors can't diagnose | Jennifer Brea
wie Sie tun, machen, Film, Beispiel
Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat. TEDTalks is a daily video podcast of the best talks and performances from the TED Conference, where the world's leading thinkers and doers give the talk of their lives in 18 minutes (or less). Look for talks on Technology, Entertainment and Design -- plus science, business, global issues, the arts and much more. Find closed captions and translated subtitles in many languages at http://www.ted.com/translate Follow TED news on Twitter: http://www.twitter.com/tednews Like TED on Facebook: https://www.facebook.com/TED Subscribe to our channel: http://www.youtube.com/user/TEDtalksDirector
Kommentare
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A fever of 104.7 degrees? Normal body temperature is 37 degrees. How didnt she die?
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what she meant by sexual deprivation?
im sexual deprived and im really ill and weak -
Unrelated but she's so beautiful.
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I noticed something, people (including me) don't appreceate things until it's taken away from them
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Good god this is terrifying, I can't even imagine something like this happening and practically ruining someone's life, having dreams crushed, Bright futures extinguished. It almost feels like something out of a movie, but it's real, and it's terrible. I send out my condolences to anybody affected by this disease, I hope that one day we can find some sort of way to "fix" diseases like this so it doesn't hurt anybody else.
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This is the same reason why I'm willing to believe women are raped just on their word. We live in a world where women have been harmed in so many various ways because people refused to believe them.
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im convinced i have this, i have so many of the signs. but no matter how many times i say it my doctors come up with something else and put me on medication i cant afford and it never works and the exaughstion is driving me fucking insane
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I've been having a bad week with my...whatever I have. Nodding off at my computer, feeling perpetually hung over, 9-hour-long migraines, inexplicable sore throat and sinusitis, and excruciating pain during prolonged standing. I've been trying to get a diagnosis of something, anything, that isn't just "drink more, sleep more, exercise more" or "talk to your therapist".
YouTube recommended this video to me just as I was waking up from an "accidental nap" at my desk. I'm crying now. You've given me hope that I can get through this, I can find a doctor that will help me, and that I can live a fulfilling life. -
Simple they ain't God just people who try to cure your cold.
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My, that was devastating :(. Hope doctors turn to these people and Study this illness and find at least a treatment.
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I have CFS and I was diagnosed 2 years ago and it's always amazing to see people shed light on the subject and it helps me explain it to others
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I was told that stress was the underlining cause of my GE problems..after 3 years, I'm still in search of the right diagnosis, and have just started to discover that it might be, in the end, bacterial, not just caused by the H.pylori (which they didn't find and has left them puzzled). I can not tell you how hurtful it was listening to doctors who would tell me to meditate and seek psychological support, friends who would also point me in that direction, dismissing me as being overly "sensitive"...It's a struggle, and though my condition is nowhere near as severe, your speech struck a common cord within me. I wish you all the luck in the world in your fight, may you find strength and patience every day anew, because that's what it takes to live with a chronic condition. Hopefully, the near future will bring significant changes for all of us suffering! Thank you for the speech!
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I was diagnosed with Lupus, but only after nine years of being told I'm a hypochondriac or it is psychological, until being sent to a kidney specialist after they began to shut down due to lupus nephritis. I almost believed them, that it was in my head, had it not been for my kidney doctor thinking it could be auto immune.
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OMG, the very first picture she shows of her is in tall weeds & grass
surrounding her in a narrow pathway. Ticks LOVE paths like this &
easily cling on to someone in these tall weeds & pathways. She says
she loves to travel & sounds like she LOVES the outdoors. Light
& sound sensitivity is another symptoms of Lyme Disease. She has all
the Lyme symptoms & I hope she checked for Lyme Disease. -
Oh my goodness. This struck so close to home. I was in tears. When I was pregnant with my first, I was bullied by my then OBGYN into getting the H1N1 flu vaccine. I had a reaction. We do know what at the time happened, but I started getting simple partial seizures when I'd gladly never had a sure before in my life, I got smell triggered migraines almost everyday, food allergies to milk, eggs, wheat, cane sugar, pineapple and a host of other things, reduced immune function and adrenal exhaustion. I had been perfectly healthy before! Everyone except my husband (who actually saw my struggle), including my own family told me it was all in my head, to just "think positive" (which is my natural state of thinking btw), or to just "buck up and do it" or to "stop being lazy". I was sooo tired, I would just lay on the floor so I could at least be with my kids. I hated myself, I thought I must just be lazy, how could everyone be wrong?
I finally saw my current ND, and after allergy testing and genetic testing, found I had some more and more common methylation mutations. while i am not where I was before my reaction, I can at least function now. I haven't had a seizure in 4 years. As long as I don't push too hard, I can still function, though it does take me longer to recover then normal people, and I no longer get frequent migraines. My ND put me on what seemed silly minerals and some vitamins and had me stop ALL other suppliments, as well as an elimination of all allergies. Though it felt like a death sentence at the time (eating was my escape) afterwards I felt like sleeping beauty waking from the kiss of my 1 true love. Sounds silly to those who never suffered so deeply, but there is hope! Most will never know your struggle, ESPECIALLY if you're pretty and thin and female. But some will truly listen. Some will help. Some will cry with you, and encourage you.
Keep fighting for your right to Life and the pursuit of happiness, which in my opinion, health is a main player.
Good luck. -
I needed to see this. I've been struggling for over a year with sudden dizziness and fatigue, often after exercise. I've had to give up on my dream of taking a promising rowing career to a semi-professional level , but because no-one else can usually tell when I am struggling, it feels like I'm going through it alone. The only diagnosis that the doctors have given me so far is of a panic disorder- It helps to know that persevering can lead to hope and community.
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As a sufferer of EMS/EHS and someone who spent up to age 44 travelling and socialising. Now there is little travelling and no socialising and even the medical profession shuns the symptoms because wifi, mobile phones and Dect (cordless phones are everywhere, even in the hospital, and so It can't possibly be a problem...it leaves you feeling isolated and frustrated by the looks that say 'are you mad?'. Chronic fatigue syndrome, MS, EHS, Parkinsons...and more are all autoimmune disorders caused by an excess of electromagnetic smog from many sources in conjunction with all the metals being sprayed by the chemtrails and the chemicals in the food chain... I wish people would open their eyes and start questioning why every other person they know is sick!
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i have cfs/me and i have since i was 5, I've had it for 9 years of my life and its taken my whole life away. I spent 4 years doing half days at school, missing every afternoon. Im now starting to do GCSEs and its really hard because of how much i have missed. I want to be able to go out with my friends but i can't,i have to go to bed early and hardly ever go out, my joints are in so much pain i sometimes never want to move. But i know people have it worse and we as a community will carry on the struggle to live, with no known help.
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The one thing that I was distracted by is the thyroid enlargement on the left side I have noted on Jen Brea. She also needs her gut bacteria checked as all disease begins in the gut.Hopefully she can find a functional medical doc.
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I have Lupus. It took three years for my doctor to finally take me serious, and if my mother weren't so insistent I probably would never have been correctly diagnosed. I'm sixteen.