Translator: Maricene Crus Reviewer: Raissa Mendes
Three years ago, one of my maternal aunts
was belatedly diagnosed with endometriosis
and, because of that late diagnosis,
her clinical condition worsened, and she needed to have her uterus removed.
But the worsening of my aunt's clinical condition
was not caused by the lack of a method to diagnose endometriosis.
My aunt didn't have access to the medical treatments for endometriosis,
because she couldn't afford their high costs.
Since this is a financial and social issue,
my aunt's situation made me think about all the other thousands of women,
in my neighborhood, my city,
in the Northeast of Brazil and in the world,
who also go through the same situation.
I realized that endometriosis is not just a disease.
It is a social problem,
since the diagnosis done by SUS
takes an average of seven years to be performed,
reaching up to 12 years,
and the paid diagnosis can cost up to 20,000 Brazilian reais,
which is clearly impossible for most of the population.
Imagine the anguish when you realize your condition is gradually worsening
and you can't do anything to change that.
During my second year in high school,
I witnessed my aunt face this distress,
and I began to wonder if we could do something to change the situation.
After a lot of work,
I discovered that, yes, you can change that.
And it is to talk about my attitude dealing with this complex problem
that I came here today.
(Applause)
But where did I begin?
Google, of course!
(Laughter)
During my first research I found out that endometriosis is characterized
by the presence of endometrial tissue outside the uterine cavity.
This tissue can be found in the outer wall of the organ,
or in other organs, such as the fallopian tubes and ovaries.
In more severe cases, this tissue can leave the reproductive system,
reaching organs such as the bladder, the intestines, and even the lungs.
In addition to that,
I found out that the main symptoms of endometriosis
are disabling pain in the abdominal region,
accompanied by pain while urinating and during sexual intercourse.
Another recurring symptom of endometriosis is infertility.
Worldwide,
endometriosis is the main cause of female infertility.
As you can see, the situation by itself is very serious.
But I could only take a broad view about endometriosis
when I realized the problems that are not so easily perceived.
For example, just out of curiosity:
who of you had heard about endometriosis before coming to the TEDxLaçador?
Yeah, I think it's kind 50% of people,
which is very good!
But this doesn't happen often.
Unfortunately, the endometriosis is not well known,
although about 10 million of Brazilian women have endometriosis,
and 176 million women worldwide have endometriosis.
It is half of the American population.
The second problem is that the pain -- the main symptom of the endometriosis --
is commonly mistaken by other problems,
like menstrual cramps,
and that detaches the patient from the definitive diagnosis.
The third point is that laparoscopy,
MRI and ultrasound --
the main diagnostic methods used today to diagnose endometriosis --
are expensive and inaccessible, or inconclusive and inefficient,
which also delays the definitive diagnosis.
But why?
Why are the current diagnostic methods expensive and inaccessible or ineffective,
and we continue using them?
I asked myself that.
Laparoscopy is a minor surgery
used to diagnose and treat endometriosis,
but it can cost up to 20,000 Brazilian reais,
besides being invasive and traumatic,
according to the testimony of women who underwent the procedure.
MRI and ultrasound
are two imaging tests,
but endometriosis is a chronic disease that takes years to develop.
When it develops and worsens, it creates points of inflammation in the tissues,
and MRI and ultrasound can only identify these outbreaks,
that is, endometriosis can only be diagnosed
when it has worsened.
So, here is a hypothetical situation: if a woman has disabling pain,
difficulty conceiving, and knows about endometriosis,
it will take her about seven years to discover the disease,
or she will have to shell out at least 20,000 Brazilian reais
to have her definitive diagnosis and an ongoing treatment.
What happens nowadays is that -- besides the disease being a problem in itself --
the way we deal with the disease is also a problem.
Even during my first research at Google,
I found out that a way to change that was to propose
a cheap, affordable, and non-invasive diagnosis, based on laboratory tests,
that could diagnose endometriosis still in its early development.
The idea was to search for the biological changes
that happen in the body of patients with endometriosis
and identify the substances related to these changes
and the levels of these substances.
The first substance I studied was the testosterone, a sex hormone,
which has its levels increased in patients with endometriosis.
The second substance I studied
was the progesterone, also a sex hormone,
but which has its levels decreased in patients with endometriosis.
The third substance was the prolactin.
This is the hormone responsible for lactation -- breast milk production --
and also has its levels increased
as a consequence of the increase in testosterone.
And the fourth substance of this initial research I have done
was the CA-125, a blood protein,
which also increases in patients with endometriosis.
I also discovered that the check of CA-125 is currently used
as an initial test for endometriosis,
but the CA-125, unfortunately, also increases in other diseases,
such as cervix cancer,
and, therefore, it is not enough to provide a definitive diagnosis.
Since then, my challenge
was to find a substance -- or a combination of substances --
that could diagnose the endometriosis,
were accurate, and wouldn't give false diagnosis,
and which could be adapted for laboratory tests.
In order to do this, I contacted
all researchers from the university in my city,
Feira de Santana State University, only to find out, unfortunately,
that none of the university laboratories had the capacity and structure
to give support to my research; they only do research on plants.
So, I went to the capital, Salvador,
and I contacted all researchers, from my area or not,
from Oswaldo Cruz Foundation, a state laboratory specialized in research
of diseases affecting public health.
But, unfortunately, I found out that no laboratory there
would be able to give me support.
Gradually, I realized that not much is known about endometriosis,
there are very few experts about this subject,
we do not yet know the causes or the cause of endometriosis
and, in general,
there isn't much interest in solving this problem.
It was very frustrating for me to realize that,
because it felt like I was also detained by the endometriosis.
I wasn't sure about what I wanted to do,
I was convinced and knew the importance of conducting this research,
but I had no way to turn it into reality.
I still kept researching on the Internet for several months,
searching for scientific articles
and developing the theoretical basis for the research,
but I couldn't see anything "physical"
that could show me it was going to give results.
Until a big turnaround changed the situation completely.
On July 1, 2014,
I found out that the Harvard Social Innovation Collaborative
had created a contest for social entrepreneurship,
called "Village to Raise a Child",
in order to invite five students from around the world
who were developing projects in the social entrepreneurship area
-- social business --
aiming their own communities.
I entered my project in the competition,
I went through the three phases and, to my delight,
I found out I had been selected on September 30, 2014
and thus I'd have the opportunity
to go to Harvard to talk to physicians and researchers
and find the mentoring
I had been seeking so much here in Brazil for three years.
At Harvard, I could talk to doctors and worldwide references in endometriosis,
but two conversations were extremely striking to me:
my talks with doctors Mark Hornstein and Marc Laufer.
Both believe in my idea,
and they have even been involved in this research.
They have validated my idea and told me it was rather pervasive.
But Dr. Marc Laufer went further
to say that he not only believes in my idea,
but he currently performs the same research that I do
and he had just been granted an investment to do that.
(Applause)
In his own words, during that conversation,
he told me, "We have the same goals."
[Repeats in Portuguese]
"It would be a pleasure if one day we could work together."
[Repeats in Portuguese]
(Applause)
Realizing that in the United States I would have all the support
I had sought in Brazil, and, unfortunately, I hadn't found,
made me want to go back to the United States once again.
And that's when I was faced with a new challenge,
the challenge of being accepted at an American university.
Once again I had no money
to conduct this process,
I had no information,
and no support from any Brazilian or international institution.
My English was and still is basic, I'm self-taught,
and I was not, generally speaking, prepared to face this process.
And I say once again because, in the previous year, 2013,
I had applied to seven American universities
and I got turned down by all of them.
But, again, I didn't allow any of this to stop me.
I got my school to pay
for all fees of my "application" process in 2014
in exchange for advertising.
I got the support from a student organization, the BSCUE,
Brazilian Students Council on Undergraduate Education,
a group of Brazilian students who study in the U.S. and others
who want to study in the U.S., and they help each other to go through the process.
And I joined a huge network,
full of people who could help me and that helped me a lot.
After a lot of work, and several sleepless nights,
I found out I had been accepted in nine American universities --
(Applause)
Thanks.
(Applause)
And I would have the opportunity to return to the United States
and continue pursuing my goal
to work and seek solutions
to the problems that I identify in my community.
I constantly see people talking about my life story
using the word "Despite...".
"Despite being black, despite being young, 19 years old,
despite coming from the countryside of Bahia,
despite being a woman,
Georgia persevered and continued following her dream."
But I disagree with that.
I can't imagine my career disassociated from my identity,
or worse yet, against my identity.
If I were not in the community where I am, where I live,
I would have never identified endometriosis as a social problem,
as I did.
If I had not identified endometriosis as a social problem,
I might never have chased after and seen the need for a cheap,
affordable and non-invasive diagnosis for the disease.
And if I had not done all that,
maybe today I wouldn't urge how much I urge,
to work more and better,
in order to empower women worldwide
so that they can change their health conditions
and, as a result, their lives.
Thanks.
(Applause)
Wow, thank you, really!
(Applause)