What happens when you have a disease doctors can't diagnose | Jennifer Brea

Translator: Joseph Geni Reviewer: Camille Martínez

Translator: Sune Vilsted Østergaard Reviewer: Anders Finn Jørgensen

Hi.

Hej.

Thank you.

Tak.

[Jennifer Brea is sound-sensitive.

[Jennifer Brea er lydfølsom.

The live audience was asked to applaud ASL-style, in silence.]

Publikum er blevet bedt om bifalde på tegnsprog, i stilhed.]

So, five years ago, this was me.

Så for fem år siden, var det her mig.

I was a PhD student at Harvard,

Jeg var Ph.d.-studerende på Harvard,

and I loved to travel.

og jeg elskede at rejse.

I had just gotten engaged to marry the love of my life.

Jeg var lige blevet forlovet med mit livs kærlighed.

Jeg var 28 år, og ligesom så mange andre, når man har et godt helbred,

I was 28, and like so many of us when we are in good health,

så følte jeg mig uovervindelig.

I felt like I was invincible.

Then one day I had a fever of 104.7 degrees.

Men en dag fik jeg 40°C i feber.

I probably should have gone to the doctor,

Jeg skulle sikkert have gået til lægen,

but I'd never really been sick in my life,

men jeg havde aldrig rigtigt været syg i mit liv,

and I knew that usually, if you have a virus,

og jeg vidste, at hvis man har en virus,

you stay home and you make some chicken soup,

så bliver man hjemme og laver kyllingesuppe,

and in a few days, everything will be fine.

og om et par dage, så er alt godt igen.

But this time it wasn't fine.

Men denne gang blev det ikke godt igen.

After the fever broke,

Efter feberen faldt,

var jeg i tre uger så svimmel, at jeg ikke kunne forlade mit hus.

for three weeks I was so dizzy, I couldn't leave my house.

I would walk straight into door frames.

Jeg gik direkte ind i dørkarme.

I had to hug the walls just to make it to the bathroom.

Jeg klyngede mig til væggen, bare for at komme på badeværelset.

That spring I got infection after infection,

Dét forår fik jeg infektion efter infektion,

and every time I went to the doctor,

og hver gang jeg gik til lægen,

he said there was absolutely nothing wrong.

sagde han, at der intet var galt.

He had his laboratory tests,

Han havde sine laboratorietests,

which always came back normal.

som altid kom tilbage normale.

All I had were my symptoms,

Alt, hvad jeg havde, var mine symptomer,

which I could describe,

som jeg kunne beskrive,

but no one else can see.

men som ingen andre kunne se.

I know it sounds silly,

Det lyder fjollet,

but you have to find a way to explain things like this to yourself,

men man må finde en måde at forklare det til sig selv på,

and so I thought maybe I was just aging.

og så tænkte jeg, at jeg måske bare var ved at blive ældre.

Måske er det sådan her det føles at være over 25.

Maybe this is what it's like to be on the other side of 25.

(Laughter)

(Latter)

Then the neurological symptoms started.

Så begyndte de neurologiske symptomer.

Sometimes I would find that I couldn't draw the right side of a circle.

Nogle gange kunne jeg ikke tegne den højre side af en cirkel.

Other times I wouldn't be able to speak or move at all.

Andre gange kunne jeg ikke tale eller bevæge mig.

I saw every kind of specialist:

Jeg så enhver form for specialist:

infektionsmedicinske læger, dermatologer, endokrinologer,

infectious disease doctors, dermatologists, endocrinologists,

cardiologists.

kardiologer.

I even saw a psychiatrist.

Jeg så endda en psykiater.

My psychiatrist said, "It's clear you're really sick,

Min psykiater sagde, "Det er tydeligt, at du er virkelig syg,

but not with anything psychiatric.

men ikke psykiatrisk.

Jeg håber, de kan finde ud af, hvad du fejler."

I hope they can find out what's wrong with you."

Den næste dag diagnotiserede min neurolog mig med konversionssyndrom.

The next day, my neurologist diagnosed me with conversion disorder.

He told me that everything --

Han fortalte mig at alting --

the fevers, the sore throats, the sinus infection,

feberen, den ømme hals, bihulebetændelsen,

all of the gastrointestinal, neurological and cardiac symptoms --

alle de gastrointestinale, neurologiske og kardiale symptomer --

were being caused by some distant emotional trauma

var forårsaget af et fjernt, følelsesmæssigt trauma,

that I could not remember.

som jeg ikke kunne erindre.

Symptomerne var virkelige, sagde han,

The symptoms were real, he said,

but they had no biological cause.

men de havde ikke biologisk årsag.

I was training to be a social scientist.

Jeg var ved at uddanne mig som sociolog.

Jeg havde studeret stastistik, sandsynlighedsregning,

I had studied statistics, probability theory,

mathematical modeling, experimental design.

matematiske modeller, eksperimentelt design.

Jeg følte, at jeg ikke bare kunne afvise min neurologs diagnose.

I felt like I couldn't just reject my neurologist's diagnosis.

It didn't feel true,

Det føltes ikke rigtigt,

but I knew from my training that the truth is often counterintuitive,

men jeg vidste fra min uddannelse, at sandheden ofte er kontraintuitiv;

so easily obscured by what we want to believe.

og meget let sløret af det, vi ønsker at tro.

So I had to consider the possibility that he was right.

Jeg var nødt til at overveje, at han muligvis havde ret.

That day, I ran a small experiment.

Dén dag lavede jeg et lille eksperiement.

I walked back the two miles from my neurologist's office to my house,

Jeg gik de 3 kilometer hjem fra min neurologs kontor

my legs wrapped in this strange, almost electric kind of pain.

med mine ben indhyllet i denne sære, næsten elekstriske smerte.

I meditated on that pain,

Jeg mediterede over smerten,

og tænkte over, hvordan mit sind kunne have gjort alt dette.

contemplating how my mind could have possibly generated all this.

As soon as I walked through the door,

Så snart jeg gik gennem døren,

I collapsed.

kollapsede jeg.

My brain and my spinal cord were burning.

Min hjerne og min ryggrad brændte.

My neck was so stiff I couldn't touch my chin to my chest,

Min nakke var så stiv, jeg ikke kunne røre mit bryst med min hage,

and the slightest sound --

og den mindste lyd --

lagnernes ruslen,

the rustling of the sheets,

my husband walking barefoot in the next room --

min mand, der gik barfodet i det andet rum --

could cause excruciating pain.

kunne forårsage ulidelig smerte.

I would spend most of the next two years in bed.

Jeg ville bruge det meste af de næste to år i sengen.

How could my doctor have gotten it so wrong?

Hvordan kunne min læge have taget så meget fejl?

I thought I had a rare disease,

Jeg troede, jeg havde en sjælden sygdom,

noget som læger aldrig havde set.

something doctors had never seen.

And then I went online

Og så gik jeg online

og fandt tusindvis af mennesker over hele verden,

and found thousands of people all over the world

living with the same symptoms,

som levede med de samme symptomer,

ligeledes isoleret,

similarly isolated,

similarly disbelieved.

på samme måde i vantro.

Some could still work,

Nogle kunne stadig arbejde,

men brugte deres aftener og weekender i sengen,

but had to spend their evenings and weekends in bed,

just so they could show up the next Monday.

kun for at kunne møde op den næste mandag.

On the other end of the spectrum,

På den anden side af spektrummet,

some were so sick

var nogle så syge,

they had to live in complete darkness,

at de var nødt til at leve i komplet mørke,

unable to tolerate the sound of a human voice

ude af stand til at klare lyden af en menneskestemmme

or the touch of a loved one.

eller beøringen af sine elskede.

I was diagnosed with myalgic encephalomyelitis.

Jeg var dianotiseret med myalgic encephalomyelitis.

You've probably heard it called "chronic fatigue syndrome."

I har sikkert hørt det blive kaldt "kronisk træthedssyndrom."

For decades, that's a name

For årtider var det et navn

that's meant that this

som har betydet at det her

has been the dominant image

har været det dominerede syn

of a disease that can be as serious as this.

på en sygsom, som kan være så alvorlig som dette.

The key symptom we all share

Symptomet, som vi alle deler,

er, at når vi anstrenger os selv -- fysisk, psykisk --

is that whenever we exert ourselves -- physically, mentally --

we pay and we pay hard.

så bøder vi for det hårdt.

If my husband goes for a run, he might be sore for a couple of days.

Hvis min mand løber en tur, så er han måske øm i et par dage.

If I try to walk half a block, I might be bedridden for a week.

Hvis jeg prøver at gå 100 meter, så er jeg måske sengeliggende i en uge.

It is a perfect custom prison.

Det er det perfekte brugerdefinerede fængsel.

I know ballet dancers who can't dance,

Jeg kender balletdansere, som ikke kan danse,

revisorere, som ikke kan lægge tal sammen,

accountants who can't add,

medical students who never became doctors.

lægestuderende, som aldrig blev læger.

It doesn't matter what you once were;

Det er ligegyldig, hvad du engang var;

du kan ikke gøre det længere.

you can't do it anymore.

It's been four years,

Det er gået fire år,

and I've still never been as well as I was

og jeg har stadig aldrig haft det så godt,

som minuttet før jeg gik hjem fra min neurologs kontor.

the minute before I walked home from my neurologist's office.

It's estimated that about 15 to 30 million people around the world

Det er anslået at omkring 15-30 millioner mennesker over hele verden

have this disease.

har denne sygdom.

In the US, where I'm from, it's about one million people.

I USA, hvor jeg er fra, er det omtrent en million mennesker.

That makes it roughly twice as common as multiple sclerosis.

Det gør den groft sagt dobbelt så hyppig, som multipel sclerose.

Patients can live for decades with the physical function

Patienter kan leve for årtider med den fysiske funktion,

of someone with congestive heart failure.

som en med kongestivt hjertesvigt.

Twenty-five percent of us are homebound or bedridden,

25 procent af os er bundet til hjemmet eller sengen,

and 75 to 85 percent of us can't even work part-time.

og 75-85 procent af os kan ikke engang arbejde deltid.

Yet doctors do not treat us

Alligevel behandler læger os ikke

og videnskaben studerer os ikke.

and science does not study us.

Hvordan kan en sygdom, der er så almindelig og altødelæggende

How could a disease this common and this devastating

have been forgotten by medicine?

været blevet glemt af lægevidenskaben?

When my doctor diagnosed me with conversion disorder,

Da min læge gav mig diagnosen konversionssyndrom,

he was invoking a lineage of ideas about women's bodies

så inddrog han en række af idéer om kvinders kroppe,

that are over 2,500 years old.

som er over 2.500 år gamle.

The Roman physician Galen thought

Den romerske læge, Galen, mente,

that hysteria was caused by sexual deprivation

at hysteriet var forårsaget af seksuel mangel

in particularly passionate women.

i særdeles passionerede kvinder.

Grækerne mente, at livmoderen ville tørre ud

The Greeks thought the uterus would literally dry up

and wander around the body in search of moisture,

og vandre rundt i kroppen i søgen efter fugt,

pressing on internal organs --

og ligge pres på indre organer --

yes --

ja --

causing symptoms from extreme emotions

og forårsage symptomer som alt fra ekstreme følelser

to dizziness and paralysis.

til svimmelhed og paralyse.

The cure was marriage and motherhood.

Kuren var ægteskab og moderskab.

These ideas went largely unchanged for several millennia until the 1880s,

Disse idéer var stort set uforandrede i adskillige årtusinder frem til 1880'erne,

when neurologists tried to modernize the theory of hysteria.

hvor neurologer prøvede at modernisere hysteri-teorien.

Sigmund Freud developed a theory

Sigmund Freud udviklede teorien,

that the unconscious mind could produce physical symptoms

at ubevidstheden kunne producere fysiske symptomer,

when dealing with memories or emotions

når det gjaldt minder eller føleleser,

too painful for the conscious mind to handle.

der var for smertefulde for bevidstheden.

It converted these emotions into physical symptoms.

Den forvandlede disee følelser til fysiske symptomer.

This meant that men could now get hysteria,

Det betød nu, at mænd godt kunne få hysteri,

but of course women were still the most susceptible.

men selvfølgelig var kvinder stadig de mest udsatte.

When I began investigating the history of my own disease,

Da jeg begyndte at undersøge historien bag min egen sygdom,

så blev jeg forbløffet over, hvor forankrede idéerne stadig er.

I was amazed to find how deep these ideas still run.

I 1934,

In 1934,

198 doctors, nurses and staff at the Los Angeles County General Hospital

blev 198 læger, sygeplejerskere og ansatte på Los Angeles County General Hospital

alvorligt syge.

became seriously ill.

They had muscle weakness, stiffness in the neck and back, fevers --

De havde muskelsvaghed, stivhed i nakken og ryggen, feber --

alle de samme symptomer, som jeg havde, da jeg blev diagnosticeret.

all of the same symptoms I had when I first got diagnosed.

Doctors thought it was a new form of polio.

Læger mente, at det var en ny form for polio.

Sidenhed har der været dokumenteret flere end 70 udbrud

Since then, there have been more than 70 outbreaks documented

over hele verden

around the world,

of a strikingly similar post-infectious disease.

af en påfaldende lignende postinfektiøs sygdom.

All of these outbreaks have tended to disproportionately affect women,

Alle disse udbrud har som regel uforholdsmæssigt ramt kvinder,

and in time, when doctors failed to find the one cause of the disease,

og med tiden, når læger ikke fandt årsagen til sygdommen,

they thought that these outbreaks were mass hysteria.

så mente de, at disse udbrud var massehysteri.

Hvorfor har denne idé været så forankret?

Why has this idea had such staying power?

I do think it has to do with sexism,

Jeg tror, det har at gøre med sexisme,

but I also think that fundamentally, doctors want to help.

men jeg tror også, at læger fundamentalt set gerne vil hjælpe.

They want to know the answer,

De vil gerne kende svaret,

and this category allows doctors to treat what would otherwise be untreatable,

og denne kategori lader læger behandle det, man ellers ville anse som uhelbredeligt,

to explain illnesses that have no explanation.

og forklare sygdomme, der ingen forklaring har.

Problemet er, at det kan gøre alvorlig skade.

The problem is that this can cause real harm.

In the 1950s, a psychiatrist named Eliot Slater

I 1950'erne, studerede en psykiater ved navn Eliot Slater

en gruppe af 85 patienter, som var diagnosticeret med hysteri.

studied a cohort of 85 patients who had been diagnosed with hysteria.

Nine years later, 12 of them were dead and 30 had become disabled.

Ni år senere var 12 af dem døde, og 30 af dem havde funktionsnedsættelse.

Many had undiagnosed conditions like multiple sclerosis,

Mange havde udiagnosticeret lidelser, som multipel sclerose,

epilepsy, brain tumors.

epilepsi, hjernesvulster.

In 1980, hysteria was officially renamed "conversion disorder."

I 1980 blev hysteri officielt omdømt til "konversionssyndrom".

When my neurologist gave me that diagnosis in 2012,

Da mine neurologer gav mig diagnosen i 2012,

he was echoing Freud's words verbatim,

så ekkoede han Freuds ord verbatim,

and even today,

og selv i dag,

women are 2 to 10 times more likely to receive that diagnosis.

er kvinder 2-10 gange mere sandsynlige til at få stillet diagnosen.

The problem with the theory of hysteria or psychogenic illness

Problemet med hysteri-teorien eller psykogene lidelser

is that it can never be proven.

er, at de aldrig kan påvises.

It is by definition the absence of evidence,

Det er per definition manglen af beviser,

and in the case of ME,

og i tilfældet med ME,

psychological explanations have held back biological research.

så har psykologiske forklaringer holdt biologisk forskning tilbage.

All around the world, ME is one of the least funded diseases.

Over hele verden er ME én af de mindst finansierede sygdomme.

In the US, we spend each year roughly 2,500 dollars per AIDS patient,

I USA bruger vi hvert år omtrent 2.500 dollars per AIDS-patient,

250 dollars per MS patient

250 dollars per MS-patient

og kun 5 dollars om året per ME-patient.

and just 5 dollars per year per ME patient.

Det var ikke bare ingenting.

This was not just lightning.

I was not just unlucky.

Det var ikke bare uheldigt.

The ignorance surrounding my disease has been a choice,

Ignorancen, der omgiver min sygdom, har været et valg.

a choice made by the institutions that were supposed to protect us.

et valg truffet af de institutioner, der skulle beskytte os.

We don't know why ME sometimes runs in families,

Vi ved ikke hvorfor ME nogle gange løber i familien,

why you can get it after almost any infection,

hvorfor man kan få det efter næsten alle infektioner

from enteroviruses to Epstein-Barr virus to Q fever,

lige fra enterovira, til Epstein-Barr-virus og Q-feber,

eller hvorfor det rammer kvinder to til tre gange så ofte som mænd.

or why it affects women at two to three times the rate of men.

Dette problem er meget større end bare min sygdom.

This issue is much bigger than just my disease.

When I first got sick,

Da jeg først blev syg,

old friends were reaching out to me.

så tog gamle venner kontakt til mig.

I soon found myself a part of a cohort of women in their late 20s

Jeg blev hurtigt en del af en gruppe af kvinder sidst i 20'erne,

whose bodies were falling apart.

hvis kroppe var ved at forfalde.

Hvad der var forbløffende var, hvor svært vi havde ved

What was striking was just how much trouble we were having

being taken seriously.

at blive taget alvorlig.

I learned of one woman with scleroderma,

En af kvinderne med sclerodermi,

an autoimmune connective tissue disease,

en autoimmun bindevævssygdom ,

who was told for years that it was all in her head.

som i årevis fik at vide, at det hele var i hendes hoved.

Between the time of onset and diagnosis,

Tiden mellem udbruddet og diagnosen

her esophagus was so thoroughly damaged,

var hendes spiserør så skadet,

she will never be able to eat again.

at hun aldrig vil kunne spise igen.

Another woman with ovarian cancer,

En anden kvinde med æggestokkræft,

who for years was told that it was just early menopause.

som i årevis fik at vide, det bare var overgangsalderen.

A friend from college,

En ven fra universitetet,

whose brain tumor was misdiagnosed for years as anxiety.

hvis hjernesvulst i årevis var fejldiagnosticeret som angst.

Here's why this worries me:

Her er hvorfor det bekymrer mig:

siden 1950'erne har antallet at autoimmune sygdomme

since the 1950s, rates of many autoimmune diseases

have doubled to tripled.

fordoblet eller tredobelt.

Forty-five percent of patients who are eventually diagnosed

45 procent af patienter, som bliver diagnosticeret

with a recognized autoimmune disease

med en anerkendt autoimmun sygdom,

are initially told they're hypochondriacs.

bliver i starten fortalt, at de er hypokondere.

Like the hysteria of old, this has everything to do with gender

Ligesom hysteriet i gamle dag, så har det alt at gøre med køn

and with whose stories we believe.

og med de historier, som vi tror på.

Seventy-five percent of autoimmune disease patients are women,

75 procent af autoimmune sygdomspatienter er kvinder,

and in some diseases, it's as high as 90 percent.

og i nogle tilfælde er det så højt som 90 procent.

Selvom at disse sygdomme uforholdsmæssigt rammer kvinder,

Even though these diseases disproportionately affect women,

they are not women's diseases.

så er det ikke en kvindesygdom.

ME affects children and ME affects millions of men.

ME rammer børn og ME rammer millioner af mænd.

And as one patient told me,

Og som en patient fortalte mig,

vi forstår det --

we get it coming and going --

if you're a woman, you're told you're exaggerating your symptoms,

hvis man er en kvinde, så siger man, at man overdriver sine symptomer,

but if you're a guy, you're told to be strong, to buck up.

men hvis man er en fyr, så siger man, at man skal være stærk.

And men may even have a more difficult time getting diagnosed.

Og mænd har det muligvis endnu sværere med at blive diagnosticeret.

My brain is not what it used to be.

Min hjerne er ikke, hvad den har været.

Here's the good part:

Her er den gode del:

despite everything, I still have hope.

på trods af alt, så har jeg stadig håb.

So many diseases were once thought of as psychological

Så mange sygdomme var engang anset som psykologiske

until science uncovered their biological mechanisms.

indtil videnskaben opdagede deres biologiske mekanismer.

Patients with epilepsy could be forcibly institutionalized

Patienter med epilepsi kunne blive tvangsindlagt

until the EEG was able to measure abnormal electrical activity in the brain.

indtil EEG kunne måle unormal elektrisk aktivitet i deres hjerne.

Multiple sclerosis could be misdiagnosed as hysterical paralysis

Multiple sclerose kunne blive fejldiagnosticeret som hysterisk paralyse

until the CAT scan and the MRI discovered brain lesions.

indtil CAT-skanninger og MRI opdagede hjernelæsioner.

And recently, we used to think

For nyligt plejede vi at mene,

that stomach ulcers were just caused by stress,

at mavesår var forårsaget af stress,

until we discovered that H. pylori was the culprit.

indtil vi opdagede at H. pylori var årsagen.

ME has never benefited from the kind of science

ME har aldrig nydt godt af denne form for videnskab,

that other diseases have had,

på samme måde som andre sygdomme har gjort,

men det er ved at ændre sig.

but that's starting to change.

In Germany, scientists are starting to find evidence of autoimmunity,

I Tyskland er forskere i gang med at finde beviser for autoimmunitet

and in Japan, of brain inflammation.

og i Japan, hjerneinflammation.

In the US, scientists at Stanford are finding abnormalities

I USA er forskere fra Stanford i gang med at finde abnormaliteter

in energy metabolism

i stofskifte,

that are 16 standard deviations away from normal.

der er 16 standard afvigelser fra det normale.

And in Norway, researchers are running a phase-3 clinical trial

Og i Norge er forskere i gang med en klinisk test i fase 3

on a cancer drug that in some patients causes complete remission.

af et kræftmedicin, der forårsager fuldstændig remission i visse patienter.

What also gives me hope

Det, som også giver mig håb,

is the resilience of patients.

er patienters modstandsdygtighed.

Online we came together,

Vi fandt sammen online,

and we shared our stories.

og vi delte vores historier.

We devoured what research there was.

Vi fortærede al den forskning der fandtes.

We experimented on ourselves.

Vi eksperimentede på os selv.

We became our own scientists and our own doctors

Vi blev vores egne forskere, og vores egne læger

because we had to be.

fordi vi var nødt til det.

And slowly I added five percent here, five percent there,

Og langsomt tilføjede jeg fem procent her, fem procent der,

indtil jeg, på en god dag,

until eventually, on a good day,

I was able to leave my home.

var i stand til at forlade mit hjem.

I still had to make ridiculous choices:

Jeg var stadig nødt til at træffe absurde valg:

Will I sit in the garden for 15 minutes, or will I wash my hair today?

Vil jeg sidde i have i 15 minutter eller vil jeg vaske mit hår?

But it gave me hope that I could be treated.

Men det gav mig håb på, at blive behandlet.

I had a sick body; that was all.

Jeg havde en syg krop; dét var det hele.

And with the right kind of help, maybe one day I could get better.

Og med den rigtige hjælp, kunne jeg måske en dag få det bedre.

I came together with patients around the world,

Jeg fandt sammen med patienter fra hele verden,

and we started to fight.

og vi begyndte at kæmpe.

We have filled the void with something wonderful,

Vi har fyldt tomrummet med noget fantastisk,

but it is not enough.

men det er ikke nok.

I still don't know if I will ever be able to run again,

Jeg ved stadigvæk ikke om jeg nogensinde vil kunne løbe igen,

or walk at any distance,

eller gå så langt, som jeg vil,

or do any of those kinetic things that I now only get to do in my dreams.

eller gøre nogle af alle de kinetiske ting, som jeg nu kun gør i mine drømme.

Men jeg er også taknemmelig over, hvor langt jeg er kommet.

But I am so grateful for how far I have come.

Progress is slow,

Fremskridt går langsomt,

and it is up

og det går op

and it is down,

og det går ned,

but I am getting a little better each day.

men jeg får det en smule bedre hver dag.

Jeg kan huske, hvordan det var, da jeg var fanget i soveværelset,

I remember what it was like when I was stuck in that bedroom,

when it had been months since I had seen the sun.

hvor det havde været måneder siden, jeg sidst havde set solen.

I thought that I would die there.

Jeg troede, at jeg skulle dø der.

But here I am today,

Men her er jeg i dag

with you,

sammen med jer

and that is a miracle.

og det er et mirakel.

I don't know what would have happened had I not been one of the lucky ones,

Jeg ved ikke hvordan det ville være, hvis jeg ikke havde været heldig,

had I gotten sick before the internet,

hvis jeg var blevet syg før internettet,

had I not found my community.

hvis jeg ikke havde fundet mit fællesskab.

I probably would have already taken my own life,

Jeg ville sikkert allerede have taget mit eget liv,

som så mange andre har gjort.

as so many others have done.

Hvor mange liv kunne vi have reddet for årtier siden,

How many lives could we have saved, decades ago,

if we had asked the right questions?

havde vi stillet de rigtige spørgsmål?

How many lives could we save today

Hvor mange liv kan vi redde i dag,

if we decide to make a real start?

hvis vi beslutter os for at gøre noget?

Even once the true cause of my disease is discovered,

Selv når den rigtige årsag til min sygdom bliver opdaget,

if we don't change our institutions and our culture,

hvis vi ikke ændrer vores institutioner og vores kultur,

we will do this again to another disease.

så vil vi gøre dette igen med en anden sygdom.

Living with this illness has taught me

At leve med denne sygdom har lært mig,

that science and medicine are profoundly human endeavors.

at videnskab og medicin er menneskelige bestræbelser.

Læger, forskere og politikere

Doctors, scientists and policy makers

are not immune to the same biases

er ikke immune til de samme bias,

that affect all of us.

som påvirker os alle.

We need to think in more nuanced ways about women's health.

Vi skal tænke over kvinders helbred på mere nuancerede måder.

Vores immunforsvar er ligeså meget en slagmark for lighed,

Our immune systems are just as much a battleground for equality

as the rest of our bodies.

som resten af vores krop.

We need to listen to patients' stories,

Vi er nødt til at lytte til patienters historier,

and we need to be willing to say, "I don't know."

og villig til at sige, "jeg ved det ikke."

"Jeg ved det ikke" er en smuk ting.

"I don't know" is a beautiful thing.

"I don't know" is where discovery starts.

"Jeg ved det ikke" er, hvor opdagelse begynder.

And if we can do that,

Og hvis vi kan gøre dette,

if we can approach the great vastness of all that we do not know,

hvis vi kan nærme os den enorme mængde af alt det, som vi ikke ved,

og istedet for at frygte usikkerhed,

and then, rather than fear uncertainty,

så kan vi måske byde den velkommen med en følelse af forunderlighed.

maybe we can greet it with a sense of wonder.

Thank you.

Tak.

Tak.

Thank you.