TEDSummit
Jennifer Brea: What happens when you have a disease doctors can't diagnose
Džen Brea (Jen Brea): Šta se dešava kada doktori ne mogu da vam postave dijagnozu
Filmed:
Readability: 4.1
2,042,782 views
Pre pet godina je članica TED-a, Džen Brea, obolela od mijalgičnog encefalomijelitisa, poznatijeg kao sindrom hroničnog umora, bolesti koja onemogućava svakodnevne aktivnosti, a tokom zaista loših dana čini čak i zvuk šuštanja čaršava nepodnošljivim. U ovom dirljivom govoru, Brea opisuje prepreke koje je susrela pri pokušaju da pronađe način lečenja ove bolesti, čije uzroke i fizičke simptome ne shvatamo u potpunosti, kao i svoju misiju da zabeleži na snimku živote pacijenata koje medicina ne može da izleči.
Jennifer Brea - Filmmaker
Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Full bio
Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Full bio
Double-click the English transcript below to play the video.
00:17
Hi.
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Zdravo.
00:19
Thank you.
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Hvala.
00:20
[Jennifer Brea is sound-sensitive.
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[Dženifer je osetljiva na zvuk.
00:22
The live audience was asked
to applaud ASL-style, in silence.]
to applaud ASL-style, in silence.]
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Publici je rečeno da aplaudira
na znakovnom jeziku, u tišini.]
na znakovnom jeziku, u tišini.]
Dakle, ovo sam ja pre pet godina.
00:25
So, five years ago, this was me.
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Bila sam doktorant na Harvardu
00:29
I was a PhD student at Harvard,
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i volela sam da putujem.
00:31
and I loved to travel.
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Tek sam se verila za ljubav svog života.
00:34
I had just gotten engaged
to marry the love of my life.
to marry the love of my life.
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Imala sam 28 godina
i, kao i mnogi od nas kada su zdravi,
i, kao i mnogi od nas kada su zdravi,
00:39
I was 28, and like so many of us
when we are in good health,
when we are in good health,
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osećala sam se nepobedivo.
00:43
I felt like I was invincible.
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Onda sam jednog dana
dobila temperaturu preko 40 stepeni.
dobila temperaturu preko 40 stepeni.
00:46
Then one day I had
a fever of 104.7 degrees.
a fever of 104.7 degrees.
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Verovatno je trebalo da odem kod doktora,
00:50
I probably should have gone to the doctor,
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ali nikada ranije nisam bila bolesna,
00:52
but I'd never really been sick in my life,
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i znala sam da, kad dobijete virus,
00:55
and I knew that usually,
if you have a virus,
if you have a virus,
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treba da ostanete kod kuće,
skuvate pileću supu
skuvate pileću supu
00:57
you stay home and you make
some chicken soup,
some chicken soup,
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i za par dana će sve biti u redu.
01:00
and in a few days,
everything will be fine.
everything will be fine.
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Međutim, ovog puta nije bilo u redu.
01:04
But this time it wasn't fine.
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Kad je groznica prestala,
01:07
After the fever broke,
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naredne tri nedelje zbog vrtoglavice
nisam mogla da izađem iz kuće.
nisam mogla da izađem iz kuće.
01:09
for three weeks I was so dizzy,
I couldn't leave my house.
I couldn't leave my house.
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Udarala sam u okvire od vrata.
01:13
I would walk straight into door frames.
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Morala sam da se pridržavam za zid
da bih stigla do kupatila.
da bih stigla do kupatila.
01:16
I had to hug the walls
just to make it to the bathroom.
just to make it to the bathroom.
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Tog proleća sam dobijala
infekciju za infekcijom,
infekciju za infekcijom,
01:20
That spring I got infection
after infection,
after infection,
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a svaki put kada bih otišla kod doktora
01:23
and every time I went to the doctor,
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rekao bi mi da je sve u redu.
01:25
he said there was absolutely
nothing wrong.
nothing wrong.
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Uradio je laboratorijske testove,
01:29
He had his laboratory tests,
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čiji bi se nalazi uvek
vratili kao normalni.
vratili kao normalni.
01:31
which always came back normal.
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Jedino što sam imala bili su simptomi
01:33
All I had were my symptoms,
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koje sam mogla da opišem,
01:35
which I could describe,
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ali koje niko drugi nije mogao da vidi.
01:37
but no one else can see.
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Znam da zvuči smešno,
01:41
I know it sounds silly,
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ali morate da potražite način
da ovakve stvari objasnite sebi,
da ovakve stvari objasnite sebi,
01:42
but you have to find a way
to explain things like this to yourself,
to explain things like this to yourself,
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pa sam mislila da možda samo starim.
01:45
and so I thought maybe I was just aging.
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Možda ovako izgleda biti stariji od 25.
01:50
Maybe this is what it's like
to be on the other side of 25.
to be on the other side of 25.
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(Smeh)
01:53
(Laughter)
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Onda su počeli neurološki simptomi.
01:56
Then the neurological symptoms started.
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Ponekad ne bih mogla
da nacrtam desnu stranu kruga.
da nacrtam desnu stranu kruga.
01:59
Sometimes I would find that I couldn't
draw the right side of a circle.
draw the right side of a circle.
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Drugom prilikom nisam mogla
da pričam ni da se krećem.
da pričam ni da se krećem.
02:04
Other times I wouldn't be able
to speak or move at all.
to speak or move at all.
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Bila sam kod svih specijalista,
02:10
I saw every kind of specialist:
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doktora za zarazne bolesti,
dermatologa, endokrinologa, kardiologa.
dermatologa, endokrinologa, kardiologa.
02:12
infectious disease doctors,
dermatologists, endocrinologists,
dermatologists, endocrinologists,
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02:15
cardiologists.
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Bila sam čak i kod psihijatra.
02:16
I even saw a psychiatrist.
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02:19
My psychiatrist said,
"It's clear you're really sick,
"It's clear you're really sick,
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Rekao mi je: „Očigledno je
da ste veoma bolesni,
da ste veoma bolesni,
ali vaš problem nije psihički.
02:22
but not with anything psychiatric.
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02:26
I hope they can find out
what's wrong with you."
what's wrong with you."
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Nadam se da će otkriti šta nije u redu.“
02:30
The next day, my neurologist
diagnosed me with conversion disorder.
diagnosed me with conversion disorder.
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Sutradan mi je neurolog
dijagnostikovao konverzivni poremećaj.
dijagnostikovao konverzivni poremećaj.
Rekao mi je da sve simptome -
02:34
He told me that everything --
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02:37
the fevers, the sore throats,
the sinus infection,
the sinus infection,
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temperaturu, bol u grlu,
sinusnu infekciju,
sinusnu infekciju,
sve stomačne, neurološke i srčane simptome
02:40
all of the gastrointestinal,
neurological and cardiac symptoms --
neurological and cardiac symptoms --
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izaziva neka daleka emocionalna trauma
02:44
were being caused
by some distant emotional trauma
by some distant emotional trauma
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koje se ne sećam.
02:47
that I could not remember.
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Ti simptomi su pravi, rekao je,
02:50
The symptoms were real, he said,
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ali nemaju biološki uzrok.
02:52
but they had no biological cause.
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Studirala sam da postanem sociolog
koji se bavi naukom.
koji se bavi naukom.
02:56
I was training to be a social scientist.
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Učila sam statistiku, teoriju verovatnoće
02:59
I had studied statistics,
probability theory,
probability theory,
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matematičko modeliranje,
dizajn eksperimenata.
dizajn eksperimenata.
03:02
mathematical modeling,
experimental design.
experimental design.
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Nisam mogla tek tako da odbacim
dijagnozu neurologa.
dijagnozu neurologa.
03:07
I felt like I couldn't just reject
my neurologist's diagnosis.
my neurologist's diagnosis.
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Nije se činilo istinitim,
03:11
It didn't feel true,
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ali su me studije naučile
da je istina često nelogična,
da je istina često nelogična,
03:13
but I knew from my training
that the truth is often counterintuitive,
that the truth is often counterintuitive,
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03:17
so easily obscured
by what we want to believe.
by what we want to believe.
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tako lako zamračena
onim u šta želimo da verujemo.
onim u šta želimo da verujemo.
Stoga sam morala
da razmotrim mogućnost da je u pravu.
da razmotrim mogućnost da je u pravu.
03:20
So I had to consider the possibility
that he was right.
that he was right.
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Tog dana sam sprovela mali ekspriment.
03:25
That day, I ran a small experiment.
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Prošetala sam tri kilometra
od njegove kancelarije do kuće.
od njegove kancelarije do kuće.
03:28
I walked back the two miles
from my neurologist's office to my house,
from my neurologist's office to my house,
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Noge mi je obuzeo neki čudan bol,
skoro kao bol izazivan elektricitetom.
skoro kao bol izazivan elektricitetom.
03:33
my legs wrapped in this strange,
almost electric kind of pain.
almost electric kind of pain.
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03:38
I meditated on that pain,
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Razmišljala sam o tom bolu,
03:40
contemplating how my mind
could have possibly generated all this.
could have possibly generated all this.
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pitala se kako bi moj um
mogao da stvori sve to.
mogao da stvori sve to.
Čim sam prešla preko praga,
03:45
As soon as I walked through the door,
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srušila sam se.
03:47
I collapsed.
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Mozak i kičmena moždina su mi goreli.
03:48
My brain and my spinal cord were burning.
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Vrat mi je bio tako ukočen
da nisam mogla da savijem glavu do grudi,
da nisam mogla da savijem glavu do grudi,
03:52
My neck was so stiff
I couldn't touch my chin to my chest,
I couldn't touch my chin to my chest,
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a i najtiši zvuk poput šuškanja čaršava
03:57
and the slightest sound --
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03:59
the rustling of the sheets,
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i koraka mog muža
bosonogog u susednoj sobi
bosonogog u susednoj sobi
04:00
my husband walking barefoot
in the next room --
in the next room --
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mogao je da izazove neizdrživ bol.
04:03
could cause excruciating pain.
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Većinu sledeće dve godine
provešću u krevetu.
provešću u krevetu.
04:07
I would spend most
of the next two years in bed.
of the next two years in bed.
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Kako je moj doktor mogao
da napravi takvu grešku?
da napravi takvu grešku?
04:11
How could my doctor
have gotten it so wrong?
have gotten it so wrong?
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Mislila sam da imam neku retku bolest,
04:14
I thought I had a rare disease,
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nešto što doktori nikada nisu videli,
04:17
something doctors had never seen.
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ali onda sam na netu
04:19
And then I went online
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otkrila hiljade ljudi širom sveta
04:21
and found thousands of people
all over the world
all over the world
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koji žive sa istim simptomima,
04:23
living with the same symptoms,
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04:26
similarly isolated,
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na isti način izolovanim,
04:27
similarly disbelieved.
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kojima, takođe, nisu verovali.
Neki su i dalje radili,
04:29
Some could still work,
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ali su morali da provedu
večeri i vikende u krevetu
večeri i vikende u krevetu
04:31
but had to spend their evenings
and weekends in bed,
and weekends in bed,
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kako bi mogli da se pojave
na poslu sledećeg ponedeljka.
na poslu sledećeg ponedeljka.
04:33
just so they could show up
the next Monday.
the next Monday.
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S druge strane,
04:36
On the other end of the spectrum,
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bilo je onih toliko bolesnih
04:38
some were so sick
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da su morali da žive u potpunoj tami,
04:40
they had to live in complete darkness,
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nesposobni da podnesu
čak i glas drugog čoveka
čak i glas drugog čoveka
04:42
unable to tolerate
the sound of a human voice
the sound of a human voice
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ili dodir voljene osobe.
04:45
or the touch of a loved one.
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Moja dijagnoza bila je
mijalgični encefalomijelitis.
mijalgični encefalomijelitis.
04:49
I was diagnosed
with myalgic encephalomyelitis.
with myalgic encephalomyelitis.
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Verovatno ste čuli da ga zovu
sindrom hroničnog umora.
sindrom hroničnog umora.
04:54
You've probably heard it called
"chronic fatigue syndrome."
"chronic fatigue syndrome."
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Decenijama je to ime
04:58
For decades, that's a name
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značilo da je ovo preovlađujuća slika
05:00
that's meant that this
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05:03
has been the dominant image
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bolesti koja može biti ovoliko ozbiljna.
05:04
of a disease that can be
as serious as this.
as serious as this.
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05:09
The key symptom we all share
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Glavni simptom koji delimo
05:11
is that whenever we exert ourselves --
physically, mentally --
physically, mentally --
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je da svaki put kada se napregnemo,
fizički ili psihički,
fizički ili psihički,
platimo debelo za to.
05:15
we pay and we pay hard.
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05:17
If my husband goes for a run,
he might be sore for a couple of days.
he might be sore for a couple of days.
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Ako moj muž ode na trčanje,
imaće upalu mišića nekoliko dana.
imaće upalu mišića nekoliko dana.
Ako ja pokušam
da prošetam polovinom bloka,
da prošetam polovinom bloka,
05:21
If I try to walk half a block,
I might be bedridden for a week.
I might be bedridden for a week.
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provešću nedelju dana u krevetu.
05:25
It is a perfect custom prison.
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To je pravi zatvor napravljen po meri.
05:28
I know ballet dancers who can't dance,
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Znam za balerine koje ne mogu da plešu,
05:31
accountants who can't add,
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za računovođe koji ne znaju da sabiraju,
05:33
medical students who never became doctors.
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studente medicine
koji nikad ne postanu doktori.
koji nikad ne postanu doktori.
Nije bitno šta ste nekad bili;
05:36
It doesn't matter what you once were;
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05:39
you can't do it anymore.
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to više ne možete da radite.
Prošle su četiri godine,
05:41
It's been four years,
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a ja nikada nisam više
bila zdrava kao onog trenutka
bila zdrava kao onog trenutka
05:43
and I've still never been as well as I was
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pre nego što sam otpešačila
kući od neurologa.
kući od neurologa.
05:46
the minute before I walked home
from my neurologist's office.
from my neurologist's office.
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Procenjuje se da između
15 i 30 miliona ljudi širom sveta
15 i 30 miliona ljudi širom sveta
05:50
It's estimated that about 15 to 30 million
people around the world
people around the world
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ima ovu bolest.
05:53
have this disease.
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U SAD, odakle ja potičem,
ima ih oko milion.
ima ih oko milion.
05:55
In the US, where I'm from,
it's about one million people.
it's about one million people.
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To znači da je obolelih oko dvaput više
nego onih sa multiplom sklerozom.
nego onih sa multiplom sklerozom.
05:58
That makes it roughly twice as common
as multiple sclerosis.
as multiple sclerosis.
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Oboleli mogu da žive više decenija
06:03
Patients can live for decades
with the physical function
with the physical function
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sa fizičkim funkcijama
nekog ko ima zatajenje srca.
nekog ko ima zatajenje srca.
06:06
of someone with congestive heart failure.
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Dvadeset pet posto među nama
ne može da izađe iz kuće ili kreveta,
ne može da izađe iz kuće ili kreveta,
06:09
Twenty-five percent of us
are homebound or bedridden,
are homebound or bedridden,
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a 75 do 85 posto ne mogu
da rade ni honorarne poslove.
da rade ni honorarne poslove.
06:12
and 75 to 85 percent of us
can't even work part-time.
can't even work part-time.
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I pored toga, doktori nas ne leče,
06:17
Yet doctors do not treat us
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a nauka nas ne proučava.
06:20
and science does not study us.
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Kako je moguće da je medicina zaboravila
06:23
How could a disease this common
and this devastating
and this devastating
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na ovako čestu i razornu bolest?
06:27
have been forgotten by medicine?
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Kada mi je doktor ustanovio
konverzivni poremećaj,
konverzivni poremećaj,
06:31
When my doctor diagnosed me
with conversion disorder,
with conversion disorder,
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pozivao se na srodne ideje
o ženskim telima
o ženskim telima
06:33
he was invoking a lineage
of ideas about women's bodies
of ideas about women's bodies
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stare preko 2 500 hiljade godina.
06:36
that are over 2,500 years old.
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Rimski lekar Galen je mislio
06:39
The Roman physician Galen thought
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da histeriju izaziva
seksualna apstinencija
seksualna apstinencija
06:40
that hysteria was caused
by sexual deprivation
by sexual deprivation
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kod posebno strastvenih žena.
06:43
in particularly passionate women.
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Grci su smatrali
da se materica bukvalno isuši
da se materica bukvalno isuši
06:47
The Greeks thought the uterus
would literally dry up
would literally dry up
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i luta po telu tražeći vlagu,
06:49
and wander around the body
in search of moisture,
in search of moisture,
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pritiskajući unutrašnje organe,
06:52
pressing on internal organs --
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da,
06:54
yes --
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i uzrokujući simptome
od veoma snažnih osećanja
od veoma snažnih osećanja
06:56
causing symptoms from extreme emotions
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do vrtoglavice i paralize.
06:59
to dizziness and paralysis.
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07:02
The cure was marriage and motherhood.
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Lek je bio brak i majčinstvo.
Ove ideje se nisu mnogo promenile
nekoliko hiljada godina,
nekoliko hiljada godina,
07:06
These ideas went largely unchanged
for several millennia until the 1880s,
for several millennia until the 1880s,
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do osamdesetih godina 19. veka,
07:11
when neurologists tried to modernize
the theory of hysteria.
the theory of hysteria.
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kada su neurolozi pokušali
da osavremene teoriju histerije.
da osavremene teoriju histerije.
Sigmund Frojd je razvio teoriju
07:15
Sigmund Freud developed a theory
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po kojoj podsvest može
uzrokovati fizičke simptome
uzrokovati fizičke simptome
07:17
that the unconscious mind
could produce physical symptoms
could produce physical symptoms
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kada se nosi sa sećanjima i emocijama
07:20
when dealing with memories or emotions
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koje su suviše bolne
da ih svesno obuzdamo.
da ih svesno obuzdamo.
07:22
too painful for the conscious
mind to handle.
mind to handle.
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To je pretvaralo ova osećanja
u fizičke simptome.
u fizičke simptome.
07:24
It converted these emotions
into physical symptoms.
into physical symptoms.
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To je značilo da sad i muškarci
pate od histerije,
pate od histerije,
07:29
This meant that men
could now get hysteria,
could now get hysteria,
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07:31
but of course women were still
the most susceptible.
the most susceptible.
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ali su žene ipak podložnije.
Kada sam počela da istražujem
istoriju svoje bolesti,
istoriju svoje bolesti,
07:35
When I began investigating
the history of my own disease,
the history of my own disease,
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bila sam zapanjena time koliko
su ove ideje duboko uvrežene.
su ove ideje duboko uvrežene.
07:39
I was amazed to find how deep
these ideas still run.
these ideas still run.
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07:43
In 1934,
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Godine 1934,
07:44
198 doctors, nurses and staff
at the Los Angeles County General Hospital
at the Los Angeles County General Hospital
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kada se 198 doktora,
medicinskih sestara i osoblja
medicinskih sestara i osoblja
Opšte bolnice
okruga Los Anđelesa razbolelo,
okruga Los Anđelesa razbolelo,
07:49
became seriously ill.
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osećali su slabost u mišićima, napetost
u vratu i leđima, imali temperaturu,
u vratu i leđima, imali temperaturu,
07:50
They had muscle weakness, stiffness
in the neck and back, fevers --
in the neck and back, fevers --
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07:55
all of the same symptoms
I had when I first got diagnosed.
I had when I first got diagnosed.
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sve simptome koje sam ja imala
kada sam dobila prvu dijagnozu.
kada sam dobila prvu dijagnozu.
Doktori su mislili da se radi
o novom tipu dečje paralize.
o novom tipu dečje paralize.
07:58
Doctors thought
it was a new form of polio.
it was a new form of polio.
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08:02
Since then, there have been more
than 70 outbreaks documented
than 70 outbreaks documented
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Od tada, bilo je više od 70
zabeleženih epidemija širom svijeta
zabeleženih epidemija širom svijeta
08:05
around the world,
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zapanjujuće sličnog
postinfektivnog oboljenja.
postinfektivnog oboljenja.
08:06
of a strikingly similar
post-infectious disease.
post-infectious disease.
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U svim epidemijama
žene su bile znatno više ugrožene,
žene su bile znatno više ugrožene,
08:09
All of these outbreaks have tended
to disproportionately affect women,
to disproportionately affect women,
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08:13
and in time, when doctors failed to find
the one cause of the disease,
the one cause of the disease,
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a vremenom, kada doktori
nisu uspeli da pronađu uzrok,
nisu uspeli da pronađu uzrok,
mislili su da je to masovna histerija.
08:17
they thought that these outbreaks
were mass hysteria.
were mass hysteria.
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Kako je ova ideja i dalje na snazi?
08:21
Why has this idea had such staying power?
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Mislim da je to povezano sa seksizmom,
08:25
I do think it has to do with sexism,
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ali takođe mislim da doktori
zaista žele da pomognu.
zaista žele da pomognu.
08:27
but I also think that fundamentally,
doctors want to help.
doctors want to help.
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Žele da znaju odgovor,
08:30
They want to know the answer,
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a ova kategorija im omogućava
da leče inače neizlečivu bolest,
da leče inače neizlečivu bolest,
08:32
and this category allows doctors to treat
what would otherwise be untreatable,
what would otherwise be untreatable,
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da objasne bolesti
koje nemaju objašnjenje.
koje nemaju objašnjenje.
08:37
to explain illnesses
that have no explanation.
that have no explanation.
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08:41
The problem is that this
can cause real harm.
can cause real harm.
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Problem je što ovo može
biti istinski štetno.
biti istinski štetno.
08:44
In the 1950s, a psychiatrist
named Eliot Slater
named Eliot Slater
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Psihijatar Eliot Slejter je 1950. godine
08:48
studied a cohort of 85 patients
who had been diagnosed with hysteria.
who had been diagnosed with hysteria.
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proučavao grupu od 85 pacijenata
kojima je ustanovljena histerija.
kojima je ustanovljena histerija.
08:52
Nine years later, 12 of them were dead
and 30 had become disabled.
and 30 had become disabled.
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Devet godina kasnije, dvanaestoro
su bili mrtvi, a 30 su postali invalidi.
su bili mrtvi, a 30 su postali invalidi.
Mnogi su patili od neotkrivenih oboljenja
poput multiple skleroze,
poput multiple skleroze,
08:56
Many had undiagnosed conditions
like multiple sclerosis,
like multiple sclerosis,
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epilepsije, tumora na mozgu.
09:00
epilepsy, brain tumors.
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09:03
In 1980, hysteria was officially
renamed "conversion disorder."
renamed "conversion disorder."
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Histerija je zvanično preimenovana
u konverzivni poremećaj 1980. godine.
u konverzivni poremećaj 1980. godine.
Kada mi je neurolog
dao tu dijagnozu 2012. godine,
dao tu dijagnozu 2012. godine,
09:07
When my neurologist gave me
that diagnosis in 2012,
that diagnosis in 2012,
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koristio je doslovce Frojdove riječi,
09:10
he was echoing Freud's words verbatim,
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a čak i danas,
09:13
and even today,
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žene imaju 2 do 10 puta veće šanse
da dobiju tu dijagnozu.
da dobiju tu dijagnozu.
09:14
women are 2 to 10 times more likely
to receive that diagnosis.
to receive that diagnosis.
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09:20
The problem with the theory of hysteria
or psychogenic illness
or psychogenic illness
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Problem sa teorijom o histeriji
ili psihogenim oboljenjima
ili psihogenim oboljenjima
je to što ih je nemoguće dokazati.
09:24
is that it can never be proven.
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To je po definiciji nedostatak dokaza,
09:26
It is by definition
the absence of evidence,
the absence of evidence,
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a u slučaju SHU-a,
09:30
and in the case of ME,
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psihološka objašnjenja su stala
na put biološkim pretragama.
na put biološkim pretragama.
09:31
psychological explanations
have held back biological research.
have held back biological research.
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Širom svijeta, istraživanje SHU-a
je među najslabije finansiranim.
je među najslabije finansiranim.
09:35
All around the world, ME is one
of the least funded diseases.
of the least funded diseases.
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U SAD, godišnje potrošimo
oko 2 500 dolara po obolelom od side,
oko 2 500 dolara po obolelom od side,
09:39
In the US, we spend each year
roughly 2,500 dollars per AIDS patient,
roughly 2,500 dollars per AIDS patient,
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250 dolara po obolelom
od multiple skleroze,
od multiple skleroze,
09:46
250 dollars per MS patient
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i samo 5 dolara za obolelog
od sindroma hroničnog umora.
od sindroma hroničnog umora.
09:50
and just 5 dollars per year
per ME patient.
per ME patient.
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Ovo se nije desilo iz vedra neba.
09:54
This was not just lightning.
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Nisam bila samo malerozna.
09:56
I was not just unlucky.
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Neznanje koje okružuje
moju bolest je izbor,
moju bolest je izbor,
09:58
The ignorance surrounding my disease
has been a choice,
has been a choice,
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3091
10:01
a choice made by the institutions
that were supposed to protect us.
that were supposed to protect us.
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4124
izbor koji su donele institucije
koje bi trebalo da nas zaštite.
koje bi trebalo da nas zaštite.
Ne znamo zbog čeka se SHU
ponekad prenosi u porodici,
ponekad prenosi u porodici,
10:07
We don't know why ME
sometimes runs in families,
sometimes runs in families,
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zašto ga možete dobiti
posle skoro bilo koje infekcije
posle skoro bilo koje infekcije
10:10
why you can get it
after almost any infection,
after almost any infection,
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10:12
from enteroviruses
to Epstein-Barr virus to Q fever,
to Epstein-Barr virus to Q fever,
190
600919
3733
od enterovirusa
do Epštajn-Barovog virusa i kju groznice.
do Epštajn-Barovog virusa i kju groznice.
Ne znamo ni zašto
2 do 3 puta češće napada žene.
2 do 3 puta češće napada žene.
10:17
or why it affects women
at two to three times the rate of men.
at two to three times the rate of men.
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Ovo pitanje je mnogo veće
od samo moje bolesti.
od samo moje bolesti.
10:21
This issue is much bigger
than just my disease.
than just my disease.
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Kad sam se razbolela,
10:24
When I first got sick,
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1183
stari prijatelji su mi se javljali.
10:25
old friends were reaching out to me.
194
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2158
10:28
I soon found myself a part
of a cohort of women in their late 20s
of a cohort of women in their late 20s
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3129
Uskoro sam bila u grupi žena
u kasnim dvadesetim
u kasnim dvadesetim
čija su se tela raspadala.
10:31
whose bodies were falling apart.
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1686
Bilo je zapanjujuće to
koliko je bilo teško učiniti
koliko je bilo teško učiniti
10:34
What was striking was just how
much trouble we were having
much trouble we were having
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622012
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da nas shvate ozbiljno.
10:36
being taken seriously.
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1158
Saznala sam za ženu sa sklerodermom,
10:38
I learned of one woman with scleroderma,
199
626577
1958
autoimunom bolešću vezivnog tkiva,
10:40
an autoimmune connective tissue disease,
200
628559
2100
kojoj su godinama govorili
da je sve to u njenoj glavi.
da je sve to u njenoj glavi.
10:42
who was told for years
that it was all in her head.
that it was all in her head.
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2710
Od pojave simptoma do dijagnoze
10:45
Between the time of onset and diagnosis,
202
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2512
jednjak joj se toliko oštetio
10:47
her esophagus was so thoroughly damaged,
203
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2427
da više nikada neće moći da jede.
10:50
she will never be able to eat again.
204
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2245
Drugoj ženi sa rakom jajnika
10:52
Another woman with ovarian cancer,
205
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2182
godinama su govorili
da je to samo rana menopauza.
da je to samo rana menopauza.
10:55
who for years was told
that it was just early menopause.
that it was just early menopause.
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2748
10:59
A friend from college,
207
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1568
Prijateljici s koledža
11:00
whose brain tumor was misdiagnosed
for years as anxiety.
for years as anxiety.
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godinama su tumor na mozgu
pogrešno smatrali anksioznošću.
pogrešno smatrali anksioznošću.
Evo zbog čega me ovo brine.
11:06
Here's why this worries me:
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Od 50-ih godina 20. veka,
učestalost mnogih autoimunih bolesti
učestalost mnogih autoimunih bolesti
11:09
since the 1950s, rates of many
autoimmune diseases
autoimmune diseases
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3451
se dvaput ili triput povećala.
11:12
have doubled to tripled.
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1703
Za 45% obolelih
za koje se najzad utvrdi da pate
za koje se najzad utvrdi da pate
11:14
Forty-five percent of patients
who are eventually diagnosed
who are eventually diagnosed
212
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2940
11:17
with a recognized autoimmune disease
213
665782
1994
od poznate autoimune bolesti
11:19
are initially told they're hypochondriacs.
214
667800
2508
se na početku kaže da su hipohondri.
Kao nekad s histerijom,
i ovo je u potpunosti povezano s polom
i ovo je u potpunosti povezano s polom
11:22
Like the hysteria of old,
this has everything to do with gender
this has everything to do with gender
215
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3150
11:25
and with whose stories we believe.
216
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1866
i s tim čijim pričama verujemo.
11:28
Seventy-five percent
of autoimmune disease patients are women,
of autoimmune disease patients are women,
217
676974
3651
Žene predstavljaju 75% obolelih
od autoimunih bolesti,
od autoimunih bolesti,
a za neke bolesti taj broj
dostiže čak 90 posto.
dostiže čak 90 posto.
11:32
and in some diseases,
it's as high as 90 percent.
it's as high as 90 percent.
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680649
3179
Iako ove bolesti nesrazmerno
češće napadaju žene,
češće napadaju žene,
11:37
Even though these diseases
disproportionately affect women,
disproportionately affect women,
219
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2857
one nisu ženske bolesti.
11:39
they are not women's diseases.
220
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1652
SHU napada decu i milione muškaraca.
11:41
ME affects children
and ME affects millions of men.
and ME affects millions of men.
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3688
Kako mi je jedan oboleli rekao,
11:45
And as one patient told me,
222
693345
1785
u škripcu smo.
11:47
we get it coming and going --
223
695154
1508
Ako ste žena, kažu vam
da preuveličavate simptome,
da preuveličavate simptome,
11:48
if you're a woman, you're told
you're exaggerating your symptoms,
you're exaggerating your symptoms,
224
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3608
11:52
but if you're a guy, you're told
to be strong, to buck up.
to be strong, to buck up.
225
700318
3458
a ako ste muškarac, kažu vam
da podignete glavu gore i budete jaki.
da podignete glavu gore i budete jaki.
11:56
And men may even have
a more difficult time getting diagnosed.
a more difficult time getting diagnosed.
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A muškarcima je možda i teže
doći do dijagnoze.
doći do dijagnoze.
12:09
My brain is not what it used to be.
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2865
Moj mozak nije više ono što je bio.
A sad vedrija strana.
12:25
Here's the good part:
228
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1327
12:28
despite everything, I still have hope.
229
736645
2179
Uprkos svemu, i dalje se nadam.
12:31
So many diseases were once
thought of as psychological
thought of as psychological
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739903
3900
Toliko mnogo bolesti se nekada
smatralo psihološkim
smatralo psihološkim
dok nauka nije otkrila
njihove biološke mehanizme.
njihove biološke mehanizme.
12:35
until science uncovered
their biological mechanisms.
their biological mechanisms.
231
743827
2908
12:39
Patients with epilepsy
could be forcibly institutionalized
could be forcibly institutionalized
232
747323
3094
Obolele od epilepsije
su nasilno stavljali u institucije,
su nasilno stavljali u institucije,
dok elektroencefalografija
nije uspela da izmeri
nije uspela da izmeri
12:42
until the EEG was able to measure
abnormal electrical activity in the brain.
abnormal electrical activity in the brain.
233
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4604
abnormalnu moždanu električnu aktivnost.
Multipla skleroza se mogla pogrešno
dijagnostikovati kao histerija,
dijagnostikovati kao histerija,
12:47
Multiple sclerosis could be misdiagnosed
as hysterical paralysis
as hysterical paralysis
234
755500
4276
dok tomografija i MRT
nisu otkrile moždane lezije.
nisu otkrile moždane lezije.
12:51
until the CAT scan and the MRI
discovered brain lesions.
discovered brain lesions.
235
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3312
A do nedavno smo mislili
12:55
And recently, we used to think
236
763945
1515
da stres uzrokuje peptički ulkus,
12:57
that stomach ulcers
were just caused by stress,
were just caused by stress,
237
765484
2820
dok nismo otkrili bakteriju uzročnika.
13:00
until we discovered
that H. pylori was the culprit.
that H. pylori was the culprit.
238
768328
3320
13:04
ME has never benefited
from the kind of science
from the kind of science
239
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2894
SHU nikada nije dobio pažnju nauke
poput drugih bolesti,
13:07
that other diseases have had,
240
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2310
ali to počinje da se menja.
13:10
but that's starting to change.
241
778053
1664
U Nemačkoj naučnici nalaze
dokaze o autoimunosti,
dokaze o autoimunosti,
13:12
In Germany, scientists are starting
to find evidence of autoimmunity,
to find evidence of autoimmunity,
242
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3541
a u Japanu o moždanim upalama.
13:16
and in Japan, of brain inflammation.
243
784226
2342
U SAD, naučnici na Stendfordu
otkrivaju abnormalnosti
otkrivaju abnormalnosti
13:19
In the US, scientists at Stanford
are finding abnormalities
are finding abnormalities
244
787406
3054
u metaboličkom stvaranju energije,
13:22
in energy metabolism
245
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1896
koje su 16 standardnih devijacija
dalje od normalnih.
dalje od normalnih.
13:24
that are 16 standard deviations
away from normal.
away from normal.
246
792404
3462
A u Norveškoj, istraživači vode
treću fazu kliničkog ispitivanja
treću fazu kliničkog ispitivanja
13:28
And in Norway, researchers
are running a phase-3 clinical trial
are running a phase-3 clinical trial
247
796640
4045
leka protiv raka koji kod nekih obolelih
izaziva potpunu remisiju.
izaziva potpunu remisiju.
13:32
on a cancer drug that in some patients
causes complete remission.
causes complete remission.
248
800709
3667
13:37
What also gives me hope
249
805798
1661
Ono što mi takođe daje nadu
je snaga obolelih osoba.
13:40
is the resilience of patients.
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2017
Združili smo se putem interneta
13:43
Online we came together,
251
811968
1874
i podelili svoje priče.
13:46
and we shared our stories.
252
814251
1679
13:49
We devoured what research there was.
253
817449
2774
Začas smo prošli
kroz postojeća istraživanja.
kroz postojeća istraživanja.
13:52
We experimented on ourselves.
254
820743
2077
Vršili smo eksperimente na sebi.
13:55
We became our own scientists
and our own doctors
and our own doctors
255
823496
2373
Postali smo sami naučnici
i sopstveni doktori,
i sopstveni doktori,
13:57
because we had to be.
256
825893
1591
jer smo to morali da budemo.
14:00
And slowly I added five percent here,
five percent there,
five percent there,
257
828378
3739
I polako sam dodala 5% tu i tamo,
14:04
until eventually, on a good day,
258
832141
2233
dok konačno, jednog dobrog dana,
14:06
I was able to leave my home.
259
834398
1906
nisam mogla da izađem iz kuće.
14:09
I still had to make ridiculous choices:
260
837815
2587
I dalje sam morala da pravim
smešne izbore.
smešne izbore.
Da li da sedim u bašti 15 minuta
ili da operem kosu danas?
ili da operem kosu danas?
14:12
Will I sit in the garden for 15 minutes,
or will I wash my hair today?
or will I wash my hair today?
261
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3841
Ali to mi je dalo nadu
da mogu biti izlečena.
da mogu biti izlečena.
14:16
But it gave me hope
that I could be treated.
that I could be treated.
262
844924
2428
Moje telo je bolesno, to je sve.
14:19
I had a sick body; that was all.
263
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2342
14:22
And with the right kind of help,
maybe one day I could get better.
maybe one day I could get better.
264
850789
4031
I možda će mi jednog dana biti bolje
sa pravom vrstom pomoći.
sa pravom vrstom pomoći.
Združila sam se s pacijentima
iz čitavog sveta
iz čitavog sveta
14:27
I came together with patients
around the world,
around the world,
265
855740
3203
i počeli smo da se borimo.
14:31
and we started to fight.
266
859466
1754
Ispunili smo prazninu nečim divnim,
14:33
We have filled the void
with something wonderful,
with something wonderful,
267
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3171
ali to nije dovoljno.
14:37
but it is not enough.
268
865698
1492
I dalje ne znam da li ću ikada
ponovo moći da trčim,
ponovo moći da trčim,
14:40
I still don't know if I will ever
be able to run again,
be able to run again,
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868662
4037
14:44
or walk at any distance,
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ili duže hodam,
14:46
or do any of those kinetic things
that I now only get to do in my dreams.
that I now only get to do in my dreams.
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ili pravim bilo koje od pokreta
koje sada imam samo u snovima.
koje sada imam samo u snovima.
14:51
But I am so grateful
for how far I have come.
for how far I have come.
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ali sam zahvalna zbog ovog napretka.
14:55
Progress is slow,
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Napredak je spor
14:57
and it is up
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i ima uspona
14:59
and it is down,
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i padova,
15:01
but I am getting a little better each day.
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a mi je svakog dana malo bolje.
15:06
I remember what it was like
when I was stuck in that bedroom,
when I was stuck in that bedroom,
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Setim se kako je bilo zatvorenoj u sobi,
15:10
when it had been months
since I had seen the sun.
since I had seen the sun.
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kada mesecima nisam videla sunce.
15:15
I thought that I would die there.
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Mislila sam da ću tu umreti.
15:18
But here I am today,
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Ali sam danas ovde,
15:21
with you,
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sa vama,
15:23
and that is a miracle.
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što je pravo čudo.
15:28
I don't know what would have happened
had I not been one of the lucky ones,
had I not been one of the lucky ones,
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Ne znam šta bih da nisam jedna od srećnih,
da sam se razbolela pre interneta,
15:32
had I gotten sick before the internet,
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da nisam pronašla svoju zajednicu.
15:34
had I not found my community.
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15:37
I probably would have already
taken my own life,
taken my own life,
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Verovatno bih oduzela sebi život,
15:41
as so many others have done.
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kao što su i mnogi drugi.
Koliko života smo mogli da spasemo
još pre nekoliko decenija
još pre nekoliko decenija
15:44
How many lives could
we have saved, decades ago,
we have saved, decades ago,
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da smo samo postavili prava pitanja?
15:47
if we had asked the right questions?
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Koliko života bismo sada mogli da sačuvamo
15:50
How many lives could we save today
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ako odlučimo da se zaista potrudimo?
15:53
if we decide to make a real start?
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Čak i kada se otkrije
pravi uzrok moje bolesti,
pravi uzrok moje bolesti,
15:57
Even once the true cause
of my disease is discovered,
of my disease is discovered,
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ako ne promenimo
naše institucije i kulturu,
naše institucije i kulturu,
16:00
if we don't change
our institutions and our culture,
our institutions and our culture,
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učinićemo ovo isto
sa nekom drugom bolešću.
sa nekom drugom bolešću.
16:04
we will do this again to another disease.
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Život sa ovom bolešću me naučio
16:07
Living with this illness has taught me
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da su nauka i medicina
tipični ljudski poduhvati.
tipični ljudski poduhvati.
16:09
that science and medicine
are profoundly human endeavors.
are profoundly human endeavors.
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Doktori, naučnici
i sami stvaraoci politike
i sami stvaraoci politike
16:13
Doctors, scientists and policy makers
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nisu imuni na pristrasnost
16:15
are not immune to the same biases
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16:19
that affect all of us.
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koja nam je svima svojstvena.
Moramo da razmišljamo
na suptilnije načine o zdravlju žena.
na suptilnije načine o zdravlju žena.
16:23
We need to think in more nuanced ways
about women's health.
about women's health.
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Naši imuni sistemi
su poprište borbe za jednakost,
su poprište borbe za jednakost,
16:27
Our immune systems are just as much
a battleground for equality
a battleground for equality
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baš kao i ostatak naših tela.
16:31
as the rest of our bodies.
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Treba da saslušamo priče obolelih
16:33
We need to listen to patients' stories,
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i treba da budemo spremni
da kažemo „ne znam“.
da kažemo „ne znam“.
16:36
and we need to be willing
to say, "I don't know."
to say, "I don't know."
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16:40
"I don't know" is a beautiful thing.
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Reći „ne znam“ je prelepa stvar.
„Ne znam“ je početak potrage.
16:43
"I don't know" is where discovery starts.
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I ako to možemo,
16:47
And if we can do that,
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ako možemo da pristupimo
ogromnom mnoštvu stvari koje ne znamo
ogromnom mnoštvu stvari koje ne znamo
16:49
if we can approach the great vastness
of all that we do not know,
of all that we do not know,
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i umjesto da se plašimo neizvesnosti,
16:53
and then, rather than fear uncertainty,
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možemo ih dočekati
i zapitati se nad njima.
i zapitati se nad njima.
16:55
maybe we can greet it
with a sense of wonder.
with a sense of wonder.
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Hvala.
16:58
Thank you.
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Hvala.
17:04
Thank you.
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ABOUT THE SPEAKER
Jennifer Brea - FilmmakerJennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name.
Why you should listen
Over the following months, while doctors insisted her condition was psychosomatic, Brea became bedridden. She started filming herself and the community that she discovered online, collecting the first footage of what would become a feature documentary about myalgic encephalomyelitis (ME), often referred to as chronic fatigue syndrome. The film, Unrest, which will premiere at the 2017 Sundance Film Festival, tells Jen's story as well as the stories of four other patients living with ME.
Brea is also the founder of #MEAction, an online organizing platform for ME patients around the world, many of whom cannot leave their homes.
Jennifer Brea | Speaker | TED.com