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

TED
17 Jan 201717:08

Summary

TLDREste guion narra la experiencia de Jennifer Brea, quien a los 28 años y en plena salud, se enfrenta a una misteriosa enfermedad que la deja casi inválida. Tras ser diagnosticada erróneamente con trastorno de conversión, descubre que padece la enfermedad de la mielite encefalítica, también conocida como síndrome de fatiga crónica. La falta de investigación y el estigma social la llevan a buscar respuestas en internet, donde encuentra a otros afectados y empieza a luchar por la visibilidad y el reconocimiento de su condición. La charla resalta la importancia de escuchar a los pacientes y la necesidad de superar los prejuicios para avanzar en la medicina.

Takeaways

  • 🎓 La narradora era una estudiante de doctorado en Harvard, disfrutando de la vida y enamorada, pero se enfermó gravemente con síntomas que no se podían explicar.
  • 🌡 Después de una fiebre alta, experimentó mareos y debilidad que le impedían salir de casa, y los médicos no encontraban una explicación física.
  • 🏥 Visitó múltiples especialistas, pero solo fue diagnosticada con trastorno de conversión, una etiqueta que atribuyó sus síntomas a un trauma emocional olvidado.
  • 🤔 A pesar de su formación en ciencias sociales y estadísticas, lucha con la idea de que sus síntomas pudieran tener un origen psicológico.
  • 🛌 Pasó dos años en cama, incapaz de encontrar ayuda médica efectiva y sintiéndose aislada y desconfiada de las instituciones médicas.
  • 🌐 Descubrió en línea a miles de personas con síntomas similares, lo que la llevó a cuestionar su diagnóstico y a buscar más información.
  • 🏥 Fue finalmente diagnosticada con encefalomielitis mialgica, también conocida como síndrome de fatiga crónica, una enfermedad poco entendida y mal financiada.
  • 💉 La falta de investigación y el estigma asociado a la enfermedad han resultado en una mala comprensión y un tratamiento ineficaz.
  • 👩‍⚕️ La historia de la enfermedad está teñida de sexismo y teorías obsoletas sobre la salud femenina, lo que ha llevado a una negligencia institucional.
  • 💪 A pesar de las dificultades, la narradora y otros pacientes han demostrado resiliencia, auto-experimentación y la creación de una comunidad en línea para compartir experiencias.
  • 🌟 La narradora mantiene la esperanza en la ciencia y el avance de la investigación, que podría finalmente desentrañar los misterios de la enfermedad y mejorar su calidad de vida.
  • 🌱 La historia enfatiza la importancia de escuchar a los pacientes, reconocer la incertidumbre y abogar por un enfoque más humano y empático en la medicina.

Q & A

  • ¿Quién era Jennifer Brea antes de enfermarse?

    -Jennifer Brea era una estudiante de doctorado en Harvard, amante de viajar y recién comprometida con el amor de su vida.

  • ¿Cuál fue el primer síntoma que experimentó Jennifer después de una fiebre alta?

    -Después de la fiebre, Jennifer experimentó mareos intensos que le impedían salir de su casa, incluso se golpeaba contra marcos de puertas y necesitaba abrazar las paredes para llegar al baño.

  • ¿Por qué Jennifer no fue diagnosticada adecuadamente al principio?

    -A pesar de sus síntomas, los exámenes de laboratorio siempre resultaron normales y los médicos no pudieron encontrar una causa física, lo que llevó a uno a diagnosticarla con trastorno de conversión.

  • ¿Qué es el trastorno de conversión según el neurólogo de Jennifer?

    -El trastorno de conversión es un diagnóstico que sugiere que los síntomas físicos, como las fiebres y los mareos, son causados por un trauma emocional lejano del que la persona no tiene memoria, y que no tiene una causa biológica.

  • ¿Cómo reaccionó Jennifer al diagnóstico de trastorno de conversión?

    -Jennifer, entrenada en ciencias sociales, no rechazó inmediatamente el diagnóstico, pero lo cuestionó y realizó un pequeño experimento observando su dolor, lo que resultó en un colapso físico al regresar a su casa.

  • ¿Qué enfermedad descubrió Jennifer que compartía síntomas con ella?

    -Jennifer descubrió que sufría de encefalomielitis mialgica, a menudo conocida como 'síndrome de fatiga crónica'.

  • ¿Cuál es el síntoma principal compartido por las personas con encefalomielitis mialgica?

    -El síntoma principal es que, después de esforzarse física o mentalmente, las personas pagan un precio alto, experimentando agotamiento severo y post-exertional que puede dejarlas en cama por días o semanas.

  • ¿Por qué la encefalomielitis mialgica (ME) no ha recibido la atención que otras enfermedades han recibido?

    -ME ha sido menos estudiada y financiada debido a la persistencia de teorías psicológicas como la histeria, que han desviado la atención de la investigación biológica y han llevado a una falta de reconocimiento y tratamiento adecuado.

  • ¿Cómo afecta la encefalomielitis mialgica a la vida diaria de Jennifer y a las de otros afectados?

    -La vida de Jennifer y de otros afectados se ve drásticamente afectada, con muchos incapaces de trabajar o realizar actividades básicas, y algunos incluso confinados a la cama o en la oscuridad debido a la intolerancia a los sonidos y el tacto.

  • ¿Qué cambios han ocurrido en la investigación y el enfoque hacia la encefalomielitis mialgica en los últimos tiempos?

    -La investigación está comenzando a cambiar, con hallazgos en Alemania sobre autoinmunidad, en Japón sobre inflamación cerebral, y en EE. UU., científicos en Stanford han encontrado anomalías en el metabolismo energético, y en Noruega se llevan a cabo ensayos clínicos con medicamentos para el cáncer.

  • ¿Cómo ha sido la esperanza y la resiliencia de Jennifer a pesar de su enfermedad?

    -Jennifer ha encontrado esperanza a través de la ciencia que comienza a descubrir los mecanismos biológicos de la ME, y la resiliencia de los pacientes al unirse en línea, compartir historias, y convertirse en sus propios científicos y médicos.

  • ¿Qué mensaje importanteJennifer desea transmitir sobre la salud de las mujeres y la investigación médica?

    -Jennifer aboga por una reflexión más matizada en la salud de las mujeres, escuchando las historias de los pacientes y reconociendo la importancia de admitir la ignorancia ('I don't know') como punto de partida para el descubrimiento y el progreso en la medicina.

Outlines

00:00

😷 La enfermedad y la sensibilidad al sonido

Joseph Geni narra su experiencia personal desde su vida activa como estudiante de doctorado en Harvard hasta su diagnóstico de 'enfermedad de conversión'. Describe cómo una fiebre alta desencadenó una serie de síntomas neurológicos que lo dejaron incapacitado, y cómo su médico atribuyó sus síntomas a un trauma emocional olvidado. Geni, con formación en ciencias sociales, reflexiona sobre la posibilidad de que el diagnóstico pudiera ser correcto, pero luego descubre que su condición es compartida por muchas personas en todo el mundo, lo que la lleva a cuestionar la validez de su diagnóstico.

05:01

🤒 La ignorancia médica y la etiqueta de 'enfermedad rara'

El relato continúa con la lucha de Geni por encontrar respuestas y la revelación de que su enfermedad, conocida comúnmente como 'síndrome de fatiga crónica', es en realidad una condición grave y poco entendida llamada 'encefalomielitis mieliítica'. Expone las estadísticas sobre la prevalencia de la enfermedad y la falta de atención médica y científica hacia ella. Geni explora la historia de la enfermedad y su asociación con teorías obsoletas sobre el cuerpo femenino, que han llevado a la estigmatización y la falta de reconocimiento de la enfermedad.

10:02

👩‍⚕️ La discriminación de género en la atención médica

En este párrafo, Geni analiza cómo la discriminación de género y las creencias obsoletas sobre la 'histeria' han afectado la forma en que se diagnostican y tratan las enfermedades autoinmunes, especialmente entre las mujeres. Destaca la importancia de escuchar las historias de los pacientes y de ser dispuestos a admitir la ignorancia médica en áreas donde la ciencia aún no ha llegado. La narración incluye ejemplos de mujeres que han sido mal diagnosticadas debido a prejuicios de género y cómo esto ha tenido consecuencias devastadoras para su salud.

15:06

🌱 La esperanza y la resiliencia de los pacientes

Geni concluye su historia con una reflexión sobre la esperanza y la resiliencia de los pacientes con enfermedades poco comprendidas. Muestra cómo la comunidad en línea ha sido una fuente de apoyo y conocimiento, y cómo los pacientes se han convertido en científicos y médicos de sí mismos. A pesar de los desafíos, Geni expresa su gratitud por los pequeños avances que ha logrado y la creencia en que, con el tiempo y el apoyo adecuado, es posible mejorar. La narración enfatiza la importancia de cuestionar las instituciones y la cultura médica para prevenir que se repitan los errores del pasado.

Mindmap

Keywords

💡Miastenia crónica

Miastenia crónica, también conocida como síndrome de fatiga crónica, es una enfermedad grave y compleja que afecta a millones de personas en todo el mundo. En el video, la narradora describe cómo esta enfermedad ha sido ignorada y malentendida por la medicina, a menudo atribuida a causas psicológicas en lugar de ser investigada desde una perspectiva biológica.

💡Trastorno de conversión

El trastorno de conversión es un diagnóstico dado en el pasado a enfermedades que no tenían una explicación física clara y se pensaba que tenían una base emocional o psicológica. En el video, la narradora menciona que fue diagnosticada con este trastorno, lo que refleja la tendencia histórica de atribuir síntomas físicos a causas psicológicas, especialmente en mujeres.

💡Historia de la enfermedad

La historia de la enfermedad se refiere a cómo se ha entendido y tratado una condición a lo largo del tiempo. En el video, se menciona la historia de la miastenia crónica y cómo ha sido vista a menudo como una forma de 'histeria en masa', lo que ha llevado a un tratamiento y comprensión inadecuados.

💡Sensibilidad al sonido

La sensibilidad al sonido es una condición en la que las personas experimentan un malestar o dolor intenso por sonidos que otros podrían encontrar normales. En el script, se menciona que la narradora es sensible al sonido, lo que es un síntoma de su miastenia crónica y que afecta su calidad de vida.

💡Escepticismo médico

El escepticismo médico se refiere a la falta de creencia o comprensión por parte de los médicos sobre una condición médica. En el video, la narradora describe su experiencia con médicos que no creían o no podían diagnosticar su enfermedad, lo que la dejó sintiéndose aislada y desatendida.

💡Investigación científica

La investigación científica es el proceso de estudio y descubrimiento que se lleva a cabo para comprender mejor las condiciones médicas y desarrollar tratamientos. En el video, se lamenta la falta de investigación en la miastenia crónica y se menciona la importancia de la ciencia para validar y tratar enfermedades que antes eran consideradas psicológicas.

💡Autoinmunidad

La autoinmunidad se refiere a un trastorno en el cual el sistema inmunitario ataca los propios tejidos del cuerpo. En el script, se menciona que hay investigaciones en curso que sugieren que la miastenia crónica podría tener un componente autoinmunitario.

💡Inflamación cerebral

La inflamación cerebral es una condición en la que el cerebro experimenta una respuesta inflamatoria. Se menciona en el video que hay investigaciones en Japón que están explorando la posibilidad de inflamación cerebral en la miastenia crónica.

💡Metabolismo de energía

El metabolismo de energía se refiere al proceso por el cual el cuerpo convierte los nutrientes en energía. En el video, se destaca que hay investigaciones en Stanford que han encontrado anomalías en el metabolismo de energía en personas con miastenia crónica, lo que podría ser clave para entender mejor esta enfermedad.

💡Psicología versus biología

El contraste entre psicología y biología en el video representa la lucha histórica entre entender las enfermedades como producto de factores mentales o físicos. La narradora aborda cómo la miastenia crónica ha sido vista predominantemente a través de un enfoque psicológico, lo que ha retrasado el reconocimiento y tratamiento de su componente biológico.

💡Comunidad en línea

La comunidad en línea se refiere a grupos de personas que se conectan a través de Internet y comparten experiencias y apoyo mutuo. En el video, la narradora describe cómo la comunidad en línea ha sido vital para su bienestar emocional y su lucha por el reconocimiento y tratamiento de la miastenia crónica.

Highlights

Jennifer Brea describes how she went from being a healthy, active PhD student to suddenly falling ill with severe symptoms that doctors could not diagnose.

After experiencing unexplained neurological symptoms and consulting multiple specialists, Jennifer Brea was diagnosed with conversion disorder, a diagnosis she questioned based on her own scientific training.

Jennifer Brea conducted a self-experiment by walking home from her neurologist’s office to explore if her symptoms were indeed psychological, only to collapse from severe pain and neurological distress.

Brea was later diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), a debilitating disease that severely limits physical and mental exertion.

ME affects an estimated 15 to 30 million people worldwide, yet it is one of the least funded and least understood diseases, particularly in the United States.

Brea discusses the historical and ongoing medical bias against diseases that predominantly affect women, such as ME, where symptoms are often dismissed as psychological.

She highlights the link between the historic concept of 'hysteria' and contemporary misdiagnoses, emphasizing that this outdated thinking still affects modern medical practices.

Brea references historical cases of disease misdiagnosis, including outbreaks that were dismissed as mass hysteria despite causing significant illness and disability.

ME patients often face skepticism and disbelief from medical professionals, which can delay proper diagnosis and treatment, causing further harm.

Jennifer Brea shares that autoimmune diseases and conditions that predominantly affect women are frequently under-researched and under-funded, despite their prevalence and severity.

She notes that many diseases previously thought to be psychological, like epilepsy and multiple sclerosis, were later understood to have clear biological causes once the appropriate technology or understanding was developed.

Recent research in various countries is beginning to uncover potential biological mechanisms behind ME, including brain inflammation, autoimmunity, and metabolic abnormalities.

Despite the challenges, Brea expresses hope due to the resilience of patients and the growing scientific interest in ME, highlighting the importance of patient advocacy and community.

She argues that medical science must recognize its own biases, especially towards diseases that predominantly affect women, to avoid repeating historical mistakes.

Brea concludes by emphasizing the importance of embracing uncertainty in medical science as a starting point for discovery, and the need for a more patient-centered approach to healthcare.

Transcripts

play00:00

Translator: Joseph Geni Reviewer: Camille Martínez

play00:17

Hi.

play00:19

Thank you.

play00:20

[Jennifer Brea is sound-sensitive.

play00:22

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

play00:25

So, five years ago, this was me.

play00:29

I was a PhD student at Harvard,

play00:31

and I loved to travel.

play00:34

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

play00:39

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

play00:43

I felt like I was invincible.

play00:46

Then one day I had a fever of 104.7 degrees.

play00:50

I probably should have gone to the doctor,

play00:52

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

play00:55

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

play00:57

you stay home and you make some chicken soup,

play01:00

and in a few days, everything will be fine.

play01:04

But this time it wasn't fine.

play01:07

After the fever broke,

play01:09

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

play01:13

I would walk straight into door frames.

play01:16

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

play01:20

That spring I got infection after infection,

play01:23

and every time I went to the doctor,

play01:25

he said there was absolutely nothing wrong.

play01:29

He had his laboratory tests,

play01:31

which always came back normal.

play01:33

All I had were my symptoms,

play01:35

which I could describe,

play01:37

but no one else can see.

play01:41

I know it sounds silly,

play01:42

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

play01:45

and so I thought maybe I was just aging.

play01:50

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

play01:53

(Laughter)

play01:56

Then the neurological symptoms started.

play01:59

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

play02:04

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

play02:10

I saw every kind of specialist:

play02:12

infectious disease doctors, dermatologists, endocrinologists,

play02:15

cardiologists.

play02:16

I even saw a psychiatrist.

play02:19

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

play02:22

but not with anything psychiatric.

play02:26

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

play02:30

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

play02:34

He told me that everything --

play02:37

the fevers, the sore throats, the sinus infection,

play02:40

all of the gastrointestinal, neurological and cardiac symptoms --

play02:44

were being caused by some distant emotional trauma

play02:47

that I could not remember.

play02:50

The symptoms were real, he said,

play02:52

but they had no biological cause.

play02:56

I was training to be a social scientist.

play02:59

I had studied statistics, probability theory,

play03:02

mathematical modeling, experimental design.

play03:07

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

play03:11

It didn't feel true,

play03:13

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

play03:17

so easily obscured by what we want to believe.

play03:20

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

play03:25

That day, I ran a small experiment.

play03:28

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

play03:33

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

play03:38

I meditated on that pain,

play03:40

contemplating how my mind could have possibly generated all this.

play03:45

As soon as I walked through the door,

play03:47

I collapsed.

play03:48

My brain and my spinal cord were burning.

play03:52

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

play03:57

and the slightest sound --

play03:59

the rustling of the sheets,

play04:00

my husband walking barefoot in the next room --

play04:03

could cause excruciating pain.

play04:07

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

play04:11

How could my doctor have gotten it so wrong?

play04:14

I thought I had a rare disease,

play04:17

something doctors had never seen.

play04:19

And then I went online

play04:21

and found thousands of people all over the world

play04:23

living with the same symptoms,

play04:26

similarly isolated,

play04:27

similarly disbelieved.

play04:29

Some could still work,

play04:31

but had to spend their evenings and weekends in bed,

play04:33

just so they could show up the next Monday.

play04:36

On the other end of the spectrum,

play04:38

some were so sick

play04:40

they had to live in complete darkness,

play04:42

unable to tolerate the sound of a human voice

play04:45

or the touch of a loved one.

play04:49

I was diagnosed with myalgic encephalomyelitis.

play04:54

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

play04:58

For decades, that's a name

play05:00

that's meant that this

play05:03

has been the dominant image

play05:04

of a disease that can be as serious as this.

play05:09

The key symptom we all share

play05:11

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

play05:15

we pay and we pay hard.

play05:17

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

play05:21

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

play05:25

It is a perfect custom prison.

play05:28

I know ballet dancers who can't dance,

play05:31

accountants who can't add,

play05:33

medical students who never became doctors.

play05:36

It doesn't matter what you once were;

play05:39

you can't do it anymore.

play05:41

It's been four years,

play05:43

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

play05:46

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

play05:50

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

play05:53

have this disease.

play05:55

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

play05:58

That makes it roughly twice as common as multiple sclerosis.

play06:03

Patients can live for decades with the physical function

play06:06

of someone with congestive heart failure.

play06:09

Twenty-five percent of us are homebound or bedridden,

play06:12

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

play06:17

Yet doctors do not treat us

play06:20

and science does not study us.

play06:23

How could a disease this common and this devastating

play06:27

have been forgotten by medicine?

play06:31

When my doctor diagnosed me with conversion disorder,

play06:33

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

play06:36

that are over 2,500 years old.

play06:39

The Roman physician Galen thought

play06:40

that hysteria was caused by sexual deprivation

play06:43

in particularly passionate women.

play06:47

The Greeks thought the uterus would literally dry up

play06:49

and wander around the body in search of moisture,

play06:52

pressing on internal organs --

play06:54

yes --

play06:56

causing symptoms from extreme emotions

play06:59

to dizziness and paralysis.

play07:02

The cure was marriage and motherhood.

play07:06

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

play07:11

when neurologists tried to modernize the theory of hysteria.

play07:15

Sigmund Freud developed a theory

play07:17

that the unconscious mind could produce physical symptoms

play07:20

when dealing with memories or emotions

play07:22

too painful for the conscious mind to handle.

play07:24

It converted these emotions into physical symptoms.

play07:29

This meant that men could now get hysteria,

play07:31

but of course women were still the most susceptible.

play07:35

When I began investigating the history of my own disease,

play07:39

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

play07:43

In 1934,

play07:44

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

play07:49

became seriously ill.

play07:50

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

play07:55

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

play07:58

Doctors thought it was a new form of polio.

play08:02

Since then, there have been more than 70 outbreaks documented

play08:05

around the world,

play08:06

of a strikingly similar post-infectious disease.

play08:09

All of these outbreaks have tended to disproportionately affect women,

play08:13

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

play08:17

they thought that these outbreaks were mass hysteria.

play08:21

Why has this idea had such staying power?

play08:25

I do think it has to do with sexism,

play08:27

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

play08:30

They want to know the answer,

play08:32

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

play08:37

to explain illnesses that have no explanation.

play08:41

The problem is that this can cause real harm.

play08:44

In the 1950s, a psychiatrist named Eliot Slater

play08:48

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

play08:52

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

play08:56

Many had undiagnosed conditions like multiple sclerosis,

play09:00

epilepsy, brain tumors.

play09:03

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

play09:07

When my neurologist gave me that diagnosis in 2012,

play09:10

he was echoing Freud's words verbatim,

play09:13

and even today,

play09:14

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

play09:20

The problem with the theory of hysteria or psychogenic illness

play09:24

is that it can never be proven.

play09:26

It is by definition the absence of evidence,

play09:30

and in the case of ME,

play09:31

psychological explanations have held back biological research.

play09:35

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

play09:39

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

play09:46

250 dollars per MS patient

play09:50

and just 5 dollars per year per ME patient.

play09:54

This was not just lightning.

play09:56

I was not just unlucky.

play09:58

The ignorance surrounding my disease has been a choice,

play10:01

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

play10:07

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

play10:10

why you can get it after almost any infection,

play10:12

from enteroviruses to Epstein-Barr virus to Q fever,

play10:17

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

play10:21

This issue is much bigger than just my disease.

play10:24

When I first got sick,

play10:25

old friends were reaching out to me.

play10:28

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

play10:31

whose bodies were falling apart.

play10:34

What was striking was just how much trouble we were having

play10:36

being taken seriously.

play10:38

I learned of one woman with scleroderma,

play10:40

an autoimmune connective tissue disease,

play10:42

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

play10:45

Between the time of onset and diagnosis,

play10:47

her esophagus was so thoroughly damaged,

play10:50

she will never be able to eat again.

play10:52

Another woman with ovarian cancer,

play10:55

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

play10:59

A friend from college,

play11:00

whose brain tumor was misdiagnosed for years as anxiety.

play11:06

Here's why this worries me:

play11:09

since the 1950s, rates of many autoimmune diseases

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have doubled to tripled.

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Forty-five percent of patients who are eventually diagnosed

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with a recognized autoimmune disease

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are initially told they're hypochondriacs.

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

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and with whose stories we believe.

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Seventy-five percent of autoimmune disease patients are women,

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

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Even though these diseases disproportionately affect women,

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they are not women's diseases.

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ME affects children and ME affects millions of men.

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And as one patient told me,

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we get it coming and going --

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

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

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

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My brain is not what it used to be.

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Here's the good part:

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despite everything, I still have hope.

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So many diseases were once thought of as psychological

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until science uncovered their biological mechanisms.

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Patients with epilepsy could be forcibly institutionalized

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

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Multiple sclerosis could be misdiagnosed as hysterical paralysis

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until the CAT scan and the MRI discovered brain lesions.

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And recently, we used to think

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that stomach ulcers were just caused by stress,

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until we discovered that H. pylori was the culprit.

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ME has never benefited from the kind of science

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that other diseases have had,

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but that's starting to change.

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

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and in Japan, of brain inflammation.

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In the US, scientists at Stanford are finding abnormalities

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in energy metabolism

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that are 16 standard deviations away from normal.

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

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

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What also gives me hope

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is the resilience of patients.

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Online we came together,

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and we shared our stories.

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We devoured what research there was.

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We experimented on ourselves.

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We became our own scientists and our own doctors

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because we had to be.

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

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until eventually, on a good day,

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I was able to leave my home.

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I still had to make ridiculous choices:

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

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But it gave me hope that I could be treated.

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I had a sick body; that was all.

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

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I came together with patients around the world,

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and we started to fight.

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We have filled the void with something wonderful,

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but it is not enough.

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

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or walk at any distance,

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

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

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Progress is slow,

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and it is up

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and it is down,

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but I am getting a little better each day.

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

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

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I thought that I would die there.

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But here I am today,

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with you,

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and that is a miracle.

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

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had I gotten sick before the internet,

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had I not found my community.

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I probably would have already taken my own life,

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as so many others have done.

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How many lives could we have saved, decades ago,

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if we had asked the right questions?

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How many lives could we save today

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if we decide to make a real start?

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Even once the true cause of my disease is discovered,

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

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we will do this again to another disease.

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Living with this illness has taught me

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that science and medicine are profoundly human endeavors.

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Doctors, scientists and policy makers

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are not immune to the same biases

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that affect all of us.

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

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Our immune systems are just as much a battleground for equality

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as the rest of our bodies.

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We need to listen to patients' stories,

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

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

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

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And if we can do that,

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

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and then, rather than fear uncertainty,

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maybe we can greet it with a sense of wonder.

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Thank you.

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Thank you.

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Etiquetas Relacionadas
M.E.DiscapacidadSaludAutoimmuneEstigmaCienciaPsicologíaDerechosPacientesResiliencia