[Music]
I dream of a health that is
truly patient-centered
dream with health systems that are
humanized that are accessible and that
be sustainable
I dream that all patients of
Latin America have access to
treatments and this becomes
a fair and equitable fair process
I dream of surgical treatments that
can save lives and that they are
available to all people who
I need sleep that this dream is
make reality some day
I’m Venezuelan, I was born in a village
called galipán that is located in a
mountain that surrounds caracas this mountain
it is called in the well-known vila
like the lung of caracas
my parents had little education
primary however we were educated with
fervent moral values and dedication to
job
where the triumph was determined by
the value that we would print to achieve
the goal that we had in life without
import any adversity
my mother’s favorite word was
I would interpret what
cast my intention was my dream
my reason for being like that
that with this purpose and that dream of
I worked hard and studied very hard
however sometimes it was not easy
because I was facing an environment
adverse and hostile for being a peasant but
really nothing stopped me so the
17 years worked and studied in the
university at 30 years old I already had children
I was married I had a graduate
own house on the beach car
an excellent executive position in a
important company that is to say had everything
what the outside world defines as
triumph
Within my plans I took for granted
discounted that at 50 I would be retired
and I could enjoy all that time that
he did not say he could enjoy at that moment
for lack of time for so much dedication
to work but one day I started to
feel tired for no apparent reason
It was about May 2000
I was so exhausted that my body
he asked for shouts for there
I decided then
to plan a trip to reset
my strength thinking that I would go back
vitalized without even imagining that
that trip would become a great
tragedy
I was so exhausted that I could not give a
step without my partner giving me the
hands to advance
can you imagine that situation a
person at 30 who had
triumphed in life but unable to give
one step
and the most serious thing was
that I could not even upload a
step to wash my hair or climb
pants was a titanic odyssey
they connected me to oxygen and in a chair
wheel
I was wondering what to do how to handle
that situation
how to survive that if doctors
they did not even know how to handle it
they diagnosed a disease called
pulmonary hypertension
so I decided to go to the United States
in search of treatments and the access that
I could not have in my country
I would be connected all my life to a
catheter and an infusion pump
for the rest of my life 24 hours a day
day and the most serious thing was that this
medication cost more than 5 thousand dollars
a month
it was really titanic
and try to survive alone in a country
that is not yours with a culture that does not
is yours with a language that is not
yours
being an immigrant is very difficult but being
immigrant with a chronic disease
without access to treatment and without insurance and
try to be good for both of you
little children is really much more
difficult
and I understood that I had an illness
rare chronic deadly and degenerative
I was dying and I could not accept it
and it was there in the middle of that
despair in that I was
collapsing that connect me to the most
essential of the human being and just breathe
because as long as I breathe I know I’m
alive because as long as I breathe I know that
I’m alive
one day
taking all the breath that I had left
I asked the doctor one of the questions
most difficult of my life
how much time is left
the answer was three years
I felt like if I was unfolded as
that if I separated my soul from my body
in my mind I was only in my little ones
children what to do with my children I could
do with them for 3 years I would not see them
grow up I would not see it graduate not the
I would see her getting married
That’s when I understood
what the relativity of the
time and the importance of each breath
I had spent all my life fighting in
against time when I expected a
promotion when I was waiting for an approval
of a loan when I expected an increase
of salary maybe a week a month or a
year seemed like an eternity but
just at that time three years that
they meant
what they meant when it came to me
life and it was not only that but
I would spend those three years with a tremendous
difficulty breathing can be
imagine what it means to get up
every morning fighting for a thread of air
in my prayers I only asked for resignation
and peace to accept my imminent death
and I remember that day came one day
anguish was gone
and I understood that he had a reality
different in front of me and I said to myself
a lot of determination you know that never
I will protest I will not ask
what but why
now I understand that I was
facing a new proposal of life
to a new purpose to help
I am convinced that we all have a
inner strength that drives us and we
makes unexpected places reach the
I have and I also have all
you and she was that force that
we really do not know where it comes from and what
we learn in universities the
that gave me the momentum and courage to
grab that disease and tell them
I ‘ll accept me in my life but to
my side not forward or backward we’re going to
walk together in this process
those words came from a heart
full of fear and full of uncertainty
I had no idea what it was
what was going to happen since I was going to
face but I made a plan
call the journalists this
disease the prevalence was one in a
million
and then summon the journalists
because we needed to meet
know us do something
and the plan worked we created the first
group of hypertension patients
pulmonary in Venezuela and then we created the
Latin society of pulmonary hypertension
the Latin society of hypertension
pulmonary was the first organization of
this nature created in the year 2005
we have had many achievements among them
we have achieved that all the leaders
Latin Americans meet meet each other
share good practices
we have empowered through workshops
education through agreements with
conventions through campaigns
educational
we have also managed to be the voice of
these and other diseases in many
platforms even in the nations
united
nowadays we are 20 organizations of
patients with pulmonary hypertension in 16
Latin American countries and each and every
one of those leaders work hard
and heroically for trying to save
lives and trying to improve the quality
of life of many people
sometimes
life confronts us with situations that
we do not wait
It is also true that despite all
that work that we have done so many
patients have not even been
diagnosed and many of them do not
they have access
maybe the plan that we draw in the
life does not come to an end like
we were expecting and a disease is coming
change the course of that plan
if you are one of those people who
is encountering adversity as
this I invite you to open a new
chapter in your life but with faith with
determination and good attitude because the
combination of the three are a
excellent medicine and finally also
I invite you to dream your dream
come true one day because
finally the last word has it
god thank you very much
[Applause]
[Music]
I dream of a health that is
truly patient-centered
dream with health systems that are
humanized that are accessible and that
be sustainable
I dream that all patients of
Latin America have access to
treatments and this becomes
a fair and equitable fair process
I dream of surgical treatments that
can save lives and that they are
available to all people who
I need sleep that this dream is
make reality some day
I’m Venezuelan, I was born in a village
called galipán that is located in a
mountain that surrounds caracas this mountain
it is called in the well-known vila
like the lung of caracas
my parents had little education
primary however we were educated with
fervent moral values and dedication to
job
where the triumph was determined by
the value that we would print to achieve
the goal that we had in life without
import any adversity
my mother’s favorite word was
I would interpret what
cast my intention was my dream
my reason for being like that
that with this purpose and that dream of
I worked hard and studied very hard
however sometimes it was not easy
because I was facing an environment
adverse and hostile for being a peasant but
really nothing stopped me so the
17 years worked and studied in the
university at 30 years old I already had children
I was married I had a graduate
own house on the beach car
an excellent executive position in a
important company that is to say had everything
what the outside world defines as
triumph
Within my plans I took for granted
discounted that at 50 I would be retired
and I could enjoy all that time that
he did not say he could enjoy at that moment
for lack of time for so much dedication
to work but one day I started to
feel tired for no apparent reason
It was about May 2000
I was so exhausted that my body
he asked for shouts for there
I decided then
to plan a trip to reset
my strength thinking that I would go back
vitalized without even imagining that
that trip would become a great
tragedy
I was so exhausted that I could not give a
step without my partner giving me the
hands to advance
can you imagine that situation a
person at 30 who had
triumphed in life but unable to give
one step
and the most serious thing was
that I could not even upload a
step to wash my hair or climb
pants was a titanic odyssey
they connected me to oxygen and in a chair
wheel
I was wondering what to do how to handle
that situation
how to survive that if doctors
they did not even know how to handle it
they diagnosed a disease called
pulmonary hypertension
so I decided to go to the United States
in search of treatments and the access that
I could not have in my country
I would be connected all my life to a
catheter and an infusion pump
for the rest of my life 24 hours a day
day and the most serious thing was that this
medication cost more than 5 thousand dollars
a month
it was really titanic
and try to survive alone in a country
that is not yours with a culture that does not
is yours with a language that is not
yours
being an immigrant is very difficult but being
immigrant with a chronic disease
without access to treatment and without insurance and
try to be good for both of you
little children is really much more
difficult
and I understood that I had an illness
rare chronic deadly and degenerative
I was dying and I could not accept it
and it was there in the middle of that
despair in that I was
collapsing that connect me to the most
essential of the human being and just breathe
because as long as I breathe I know I’m
alive because as long as I breathe I know that
I’m alive
one day
taking all the breath that I had left
I asked the doctor one of the questions
most difficult of my life
how much time is left
the answer was three years
I felt like if I was unfolded as
that if I separated my soul from my body
in my mind I was only in my little ones
children what to do with my children I could
do with them for 3 years I would not see them
grow up I would not see it graduate not the
I would see her getting married
That’s when I understood
what the relativity of the
time and the importance of each breath
I had spent all my life fighting in
against time when I expected a
promotion when I was waiting for an approval
of a loan when I expected an increase
of salary maybe a week a month or a
year seemed like an eternity but
just at that time three years that
they meant
what they meant when it came to me
life and it was not only that but
I would spend those three years with a tremendous
difficulty breathing can be
imagine what it means to get up
every morning fighting for a thread of air
in my prayers I only asked for resignation
and peace to accept my imminent death
and I remember that day came one day
anguish was gone
and I understood that he had a reality
different in front of me and I said to myself
a lot of determination you know that never
I will protest I will not ask
what but why
now I understand that I was
facing a new proposal of life
to a new purpose to help
I am convinced that we all have a
inner strength that drives us and we
makes unexpected places reach the
I have and I also have all
you and she was that force that
we really do not know where it comes from and what
we learn in universities the
that gave me the momentum and courage to
grab that disease and tell them
I ‘ll accept me in my life but to
my side not forward or backward we’re going to
walk together in this process
those words came from a heart
full of fear and full of uncertainty
I had no idea what it was
what was going to happen since I was going to
face but I made a plan
call the journalists this
disease the prevalence was one in a
million
and then summon the journalists
because we needed to meet
know us do something
and the plan worked we created the first
group of hypertension patients
pulmonary in Venezuela and then we created the
Latin society of pulmonary hypertension
the Latin society of hypertension
pulmonary was the first organization of
this nature created in the year 2005
we have had many achievements among them
we have achieved that all the leaders
Latin Americans meet meet each other
share good practices
we have empowered through workshops
education through agreements with
conventions through campaigns
educational
we have also managed to be the voice of
these and other diseases in many
platforms even in the nations
united
nowadays we are 20 organizations of
patients with pulmonary hypertension in 16
Latin American countries and each and every
one of those leaders work hard
and heroically for trying to save
lives and trying to improve the quality
of life of many people
sometimes
life confronts us with situations that
we do not wait
It is also true that despite all
that work that we have done so many
patients have not even been
diagnosed and many of them do not
they have access
maybe the plan that we draw in the
life does not come to an end like
we were expecting and a disease is coming
change the course of that plan
if you are one of those people who
is encountering adversity as
this I invite you to open a new
chapter in your life but with faith with
determination and good attitude because the
combination of the three are a
excellent medicine and finally also
I invite you to dream your dream
come true one day because
finally the last word has it
god thank you very much
[Applause]
[Music]
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