quick question how many of you know
someone who has been diagnosed with a
medical condition maybe it’s you or
maybe it’s someone else see some hands
the vast majority of you I have
discovered that on top of the physical
condition patients experience there’s an
invisible ailment as well I’m going to
tell you about an app that I am building
that hopes to solve this problem I’m 15
not long ago I heard the stories of two
teenagers that changed my thinking
forever Story number one in the 1980s a
teenage girl named Suzy developed a rare
autoimmune disease Suzy had just
finished high school and was studying
abroad in England before starting
college she was enjoying a new
independent life with the whole world in
front of her suddenly Suzy developed two
blisters on her arm and fell ill the
blisters soon spread to the rest of her
body after a skin biopsy in England Suzy
was flown back to the United States and
diagnosed with a rare autoimmune disease
called pemphigus vulgaris which affects
one in a million people every year
Suzy went from being a carefree student
to lying in a hospital bed she suffered
from pain all over her body as her skin
blistered even the wind blowing on her
skin caused searing pain the majority of
people with Suzy’s condition are in
their 50s and 60s for Suzy experiencing
her condition as a teenager was so rare
that she was a featured patient at
medical teaching conferences medical
students residents fellows and even
specialists from other hospitals came to
examine her Suzy’s hopes of going to
college and even just being a normal
teenager were halted the only thing
worse than the condition itself was the
treatment high doses of steroids cause
weight gain
a round face pudgy cheeks acne and over
time crippling hip damage which
Suzie was only 18 years old at the time
and she just didn’t know how to take
care of herself with her condition her
doctors had treated pemphigus before in
adults but they didn’t routinely see it
in teenagers Suzie wished that she can
meet someone like her another teenage
girl with her condition who could
understand her ordeal and guide her
through her trials Suzie felt battered
physically and emotionally even though
her family and friends were always there
for her they just couldn’t truly
understand what she was going through
Suzie wished she could meet someone like
her however is the 1980s the internet
was not yet accessible and there was
definitely no social media Suzie didn’t
just feel like one in a million
she felt like the only one in the world
let’s leave Susie that hospital bed for
now and fast-forward 30 years I was
speaking about Suzie story at an event
after my presentation a college-age girl
named autumn approached me and shared
her story autumn had been diagnosed with
common Lyme disease however even after
working with multiple doctors and
undergoing many different treatments she
still experienced symptoms
autumn struggled emotionally as well she
thought she’d developed depression and
anxiety she often wondered if this is
going to be the rest of my life is life
worth living autumn found an outlet for
her motions through writing
however when her parents read what she
had written they were shocked they had
no idea what she was going through even
her closest friends when they when they
heard of autumns disease and oppression
slowly faded away because they just
couldn’t understand autumn felt isolated
and abandoned
when I first heard these two stories
Susi’s and autumns I realized two things
when I heard Suzy’s story I realized
that when patients are diagnosed with
medical conditions they experienced too
overwhelming problems the first problem
is a lack of access to the shared wisdom
and experience of other patients the
second problem is the lack of access to
emotional support on a level that only
patients who have been there can provide
when I heard autumns story I realized
that these two problems a lack of access
to shared experience and tips from other
patients as well as a feeling of
emotional isolation are problems
experienced by many patients not just
Suzy thirty years ago Suzy didn’t have
the technology to reach out and connect
with people around the world
autumns story occurred during the
technology age but she was still unable
to find a personal meaningful connection
why why were these two patients unable
to find a connection that’s where my
exploration and research started I found
a 2013 Pew Research Center study that
shows that one out of every four
patients seek speer to peer health
advice then I discovered that patients
with similar conditions can seek out
face-to-face support groups online
support groups and forms on condition
Association websites such as the one
hosted by the American Diabetes
Association patients are forming
communities where they can connect
support each other and learn from the
experiences of others who have gone
before them Susannah Fox the former
chief technology officer of the US
Department of Health and Human Services
praises the value of experienced
patients sharing their own wisdom and
practical tips with newly diagnosed
patients I started asking questions such
as what if these face-to-face and online
support groups
scattered all over the globe could be
accessed from one online platform what
if patients could receive the support
and information they need when they need
it and is it possible for patients to be
connected with other patients their own
age
Diezel these questions formed into an
idea technology has the power to bring
people together in build communities
right so I am building an app I am
building an app where patients will be
able to search for any disease and
instantly connect to a global community
of people with the same disease in these
communities patients can find emotional
support learn from the experiences of
others learn from the experiences of
others and share their own practical
tips posts in the communities are rated
by the users so that the most valuable
crowd review posts bubble to the top and
that is why I’m calling the app bubble
health you will be able to access bubble
health at any time right from your
mobile device I’m a teenager after I
heard the stories of Susie and autumn
and what they went through his teenagers
I have designed a feature where patients
will be able to connect with other
patients their own age bubble health
intends to support and inform patients
better informed patients will enable
better conversations with their doctors
so it’s a win for everybody
imagine you have just been diagnosed
with a medical condition you feel scared
isolated panicked you don’t know where
to turn well your life ever be the same
you experience the swell of negative
emotions but then you pull out your
phone and with the push of a button your
fear and uncertainty can evaporate and
that is because you have been instantly
connected to a global community of
people who know what you are going
this is my vision for the future a
future where patients are no longer
alone a future where patients have no
more unanswered questions in the wisdom
of millions of patients are right at
your fingertips however I can’t build
this future alone but we can a community
isn’t a community without people like
you and me willing to share their own
personal experiences in practical tips
for the benefit of others if we’re not
patients now we will be in the future
so let’s ensure that we all have access
to the support help and information we
need when we need it build community be
community yes I hope that my new app
will make a profound difference for many
people but after a year of research
learning from patients and starting
development on the app I’ve come to
realize that it’s all about one
fundamental human need connection so
I’ve come to believe that if you are
patient it’s normal if you’re feeling
isolated it’s normal if you crave
connection you are not the only one
experiencing these emotions have the
courage to reach out to the people
around you whether that’s family friends
or physicians because they can’t read
your mind and can only help if you tell
them what you need or if you tell them
how you feel and if you know a patient
understand that they may feel isolated
with their condition understand that
they may feel like they understand that
they may feel like they’re the only ones
in the world or that no one wants to
talk to them about their disease so what
you can do
is every week reach out and just talk
don’t pity them up be there for them and
support them and by the way avoid sad
puppy eyes because I believe with my new
app or without it connection is part of
the cure oh and by the way remember Suzy
the teenage girl who saw her dreams of
college and even just her normal life
slowly slip away she lay in a hospital
bed well Suzy has since left that
hospital bed graduated college earned a
master’s degree started a family and
seen her dreams come true
that teenage girl has grown into a
powerful woman and that woman is my mom
and she’s sitting right here in the
and mom you know in my app is released
I’m gonna have to help you download it
thank you [Applause]
someone who has been diagnosed with a
medical condition maybe it’s you or
maybe it’s someone else see some hands
the vast majority of you I have
discovered that on top of the physical
condition patients experience there’s an
invisible ailment as well I’m going to
tell you about an app that I am building
that hopes to solve this problem I’m 15
not long ago I heard the stories of two
teenagers that changed my thinking
forever Story number one in the 1980s a
teenage girl named Suzy developed a rare
autoimmune disease Suzy had just
finished high school and was studying
abroad in England before starting
college she was enjoying a new
independent life with the whole world in
front of her suddenly Suzy developed two
blisters on her arm and fell ill the
blisters soon spread to the rest of her
body after a skin biopsy in England Suzy
was flown back to the United States and
diagnosed with a rare autoimmune disease
called pemphigus vulgaris which affects
one in a million people every year
Suzy went from being a carefree student
to lying in a hospital bed she suffered
from pain all over her body as her skin
blistered even the wind blowing on her
skin caused searing pain the majority of
people with Suzy’s condition are in
their 50s and 60s for Suzy experiencing
her condition as a teenager was so rare
that she was a featured patient at
medical teaching conferences medical
students residents fellows and even
specialists from other hospitals came to
examine her Suzy’s hopes of going to
college and even just being a normal
teenager were halted the only thing
worse than the condition itself was the
treatment high doses of steroids cause
weight gain
a round face pudgy cheeks acne and over
time crippling hip damage which
Suzie was only 18 years old at the time
and she just didn’t know how to take
care of herself with her condition her
doctors had treated pemphigus before in
adults but they didn’t routinely see it
in teenagers Suzie wished that she can
meet someone like her another teenage
girl with her condition who could
understand her ordeal and guide her
through her trials Suzie felt battered
physically and emotionally even though
her family and friends were always there
for her they just couldn’t truly
understand what she was going through
Suzie wished she could meet someone like
her however is the 1980s the internet
was not yet accessible and there was
definitely no social media Suzie didn’t
just feel like one in a million
she felt like the only one in the world
let’s leave Susie that hospital bed for
now and fast-forward 30 years I was
speaking about Suzie story at an event
after my presentation a college-age girl
named autumn approached me and shared
her story autumn had been diagnosed with
common Lyme disease however even after
working with multiple doctors and
undergoing many different treatments she
still experienced symptoms
autumn struggled emotionally as well she
thought she’d developed depression and
anxiety she often wondered if this is
going to be the rest of my life is life
worth living autumn found an outlet for
her motions through writing
however when her parents read what she
had written they were shocked they had
no idea what she was going through even
her closest friends when they when they
heard of autumns disease and oppression
slowly faded away because they just
couldn’t understand autumn felt isolated
and abandoned
when I first heard these two stories
Susi’s and autumns I realized two things
when I heard Suzy’s story I realized
that when patients are diagnosed with
medical conditions they experienced too
overwhelming problems the first problem
is a lack of access to the shared wisdom
and experience of other patients the
second problem is the lack of access to
emotional support on a level that only
patients who have been there can provide
when I heard autumns story I realized
that these two problems a lack of access
to shared experience and tips from other
patients as well as a feeling of
emotional isolation are problems
experienced by many patients not just
Suzy thirty years ago Suzy didn’t have
the technology to reach out and connect
with people around the world
autumns story occurred during the
technology age but she was still unable
to find a personal meaningful connection
why why were these two patients unable
to find a connection that’s where my
exploration and research started I found
a 2013 Pew Research Center study that
shows that one out of every four
patients seek speer to peer health
advice then I discovered that patients
with similar conditions can seek out
face-to-face support groups online
support groups and forms on condition
Association websites such as the one
hosted by the American Diabetes
Association patients are forming
communities where they can connect
support each other and learn from the
experiences of others who have gone
before them Susannah Fox the former
chief technology officer of the US
Department of Health and Human Services
praises the value of experienced
patients sharing their own wisdom and
practical tips with newly diagnosed
patients I started asking questions such
as what if these face-to-face and online
support groups
scattered all over the globe could be
accessed from one online platform what
if patients could receive the support
and information they need when they need
it and is it possible for patients to be
connected with other patients their own
age
Diezel these questions formed into an
idea technology has the power to bring
people together in build communities
right so I am building an app I am
building an app where patients will be
able to search for any disease and
instantly connect to a global community
of people with the same disease in these
communities patients can find emotional
support learn from the experiences of
others learn from the experiences of
others and share their own practical
tips posts in the communities are rated
by the users so that the most valuable
crowd review posts bubble to the top and
that is why I’m calling the app bubble
health you will be able to access bubble
health at any time right from your
mobile device I’m a teenager after I
heard the stories of Susie and autumn
and what they went through his teenagers
I have designed a feature where patients
will be able to connect with other
patients their own age bubble health
intends to support and inform patients
better informed patients will enable
better conversations with their doctors
so it’s a win for everybody
imagine you have just been diagnosed
with a medical condition you feel scared
isolated panicked you don’t know where
to turn well your life ever be the same
you experience the swell of negative
emotions but then you pull out your
phone and with the push of a button your
fear and uncertainty can evaporate and
that is because you have been instantly
connected to a global community of
people who know what you are going
this is my vision for the future a
future where patients are no longer
alone a future where patients have no
more unanswered questions in the wisdom
of millions of patients are right at
your fingertips however I can’t build
this future alone but we can a community
isn’t a community without people like
you and me willing to share their own
personal experiences in practical tips
for the benefit of others if we’re not
patients now we will be in the future
so let’s ensure that we all have access
to the support help and information we
need when we need it build community be
community yes I hope that my new app
will make a profound difference for many
people but after a year of research
learning from patients and starting
development on the app I’ve come to
realize that it’s all about one
fundamental human need connection so
I’ve come to believe that if you are
patient it’s normal if you’re feeling
isolated it’s normal if you crave
connection you are not the only one
experiencing these emotions have the
courage to reach out to the people
around you whether that’s family friends
or physicians because they can’t read
your mind and can only help if you tell
them what you need or if you tell them
how you feel and if you know a patient
understand that they may feel isolated
with their condition understand that
they may feel like they understand that
they may feel like they’re the only ones
in the world or that no one wants to
talk to them about their disease so what
you can do
is every week reach out and just talk
don’t pity them up be there for them and
support them and by the way avoid sad
puppy eyes because I believe with my new
app or without it connection is part of
the cure oh and by the way remember Suzy
the teenage girl who saw her dreams of
college and even just her normal life
slowly slip away she lay in a hospital
bed well Suzy has since left that
hospital bed graduated college earned a
master’s degree started a family and
seen her dreams come true
that teenage girl has grown into a
powerful woman and that woman is my mom
and she’s sitting right here in the
and mom you know in my app is released
I’m gonna have to help you download it
thank you [Applause]
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