Diabetes -- time for a change | Fredrik Debong | TEDxVienna
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last
well look at that love's bloody amazing
isn't it we can live it be part of it
enjoy it and be part of the society
being taken care of without actually
contributing much to it we have that
option yet every now and then as humans
face obstacles something happens where
we have to step out of that song which
was which we just heard of and do
something to clay to climb those
obstacles to jump over those hurdles
they force us to change ourselves or to
change society here something's changing
I believe that these changemakers are no
longer you know the industry or the
researchers but actually normal people
like you and I and I have some proof of
it my hurdle my obstacle is life with
diabetes and sometimes as diabetic you
share these stories these stories about
how it started for us our dxi diagnosis
stories mine goes a little something
like this I was out in the Stockholm
archipelago with my grandfather this was
in 1984 I was four and a half and he'd
brought beer for himself water for us
and juice for me now after ten minutes
I'd finished the juice and after 15
minutes I finished the water and as I
came up to him and asked for a beer at
the age and forma for four and a half he
knew that something was off now lucky
enough this old man was an old doctor so
he thought back to med school and
realized that oh yeah wait a minute type
1 diabetes symptoms extreme thirst
all right a few days later I had my
diagnosis lo and behold now I love
stories
and one of my favorite stories is Star
Wars who is not seen Star Wars in here
all right
gotcha and if I asked ya you know the
opposite if I asked who watched it no
one would okay
anyway this is so installer words have
you you've seen that Luke and Anakin
both had this option to go back where
obi-wan asks Anakin hey do you want to
come with us and he goes yeah let's go
they had the option though to turn back
well type one diabetes doesn't care
there's no choice it grabs you it has
you and it will not let go it is chronic
now medically what happens is this my or
to my immune system attacked my body for
some reason it turned into the Death
Star and totally attacked my beta cells
place right around here in my pancreas
now these beta cells they used to
produce insulin well since they are no
more well I have no insulin anymore and
insulin is a very vital hormone when it
comes to handling sugar the sugar which
we get from our food and enters which
enters our bloodstream needs to be
accepted by cells cells then do the
little magic and you have energy
well insulin kind of opens the door to
the cell and if they if there is none
the blood glucose starts rising what
happens then is that the blood turns
acidic we call that a diabetic
ketoacidosis when it reaches a level
where it is severe it seriously
dangerous to us now
this disease is chronic and
does not leave and there is no cure but
in today's society we have the therapy
and the therapy was invented about a
hundred years ago by Frederick Banting
and Charles best to Canadians it
consists of injecting insulin and thanks
to that we can live we simply have to
shoot it with needles or insulin pumps
or in that way we can get that insulin
which we lack which we can no longer
produce it's great but insulin is a very
dangerous hormone you see if I
miscalculate a bit and shoot a bit too
much insulin I could have a hypoglycemia
that is an episode of low blood sugar
and that can be a bit dangerous I can
fall unconscious and bad things can
happen
I can also fall into a coma I can have
accidents in that state and it's not
really a very pleasant state to be in so
due to this danger we all have to become
very data-driven it goes a little
something like this first I need to
check my current blood glucose that's
like getting my current address I do
that I take a little strip pertaining to
my blood glucose testing device piercing
the skin of my fingers squeezing out a
droplet of blood and there yes I just
licked the blood off my finger I'm a
vampire it's Halloween 194 well that's
about twice as high as it should be
great never put the remote in the back
pocket learnt that good anyway
so now I have my current blood glucose
then I need to estimate the food in my
plate like what's in front of me how
much carbs how many carbs and then I
need to consider what am i doing next am
I going to go for a marathon or am I
going to stand on stage you see
carbs of course increase the blood
glucose and sports actually decrease the
blood glucose if only it were that
simple you see standing on stage it's
kind of stressing I'm a bit nervous so I
have an increased cortisol level stress
hormone and that increases blood glucose
being in love other hormones are play
decreases go skydiving cortisol again
adrenaline it all kind of messes our
view of the world as type 1 diabetics or
a therapy it messes it up you see we are
not machines we're human beings but we
live with this algorithm as the guiding
principle of our lives back in 1984 was
our starting therapy I needed to become
my own pancreas using needles blood and
brains since I have to do this every
meal of the day and a couple of times in
between just to check for instance when
on stage I've ended up taking about
60,000 shots in the last few years using
needles and since I can't do it blindly
I've had to do 75,000 blood glucose
tests
it's um so now today we have the luxury
of more or less real-time readings of in
thanks to this sensor measuring the
glucose level in my interstitial fluid
this fluid between my cells and insulin
pumps connected to us through little
tubes which push insulin into our bodies
so we automate parts of it and that's
great we know that this therapy works we
simply have to become the involuntary
quantified self serve our society we
know that it works for an average we
only live eight years shorter lives than
you guys a hundred years ago I would
have been dead at five years of age yet
yes we know that we can live long and
prosper sure but what drives us to test
to measure to do this all
of time all this time the rest of our
lives is not a lustful life but rather
the fear of a short disgusting and
painful lives that's how the old Greeks
describe life with diabetes back a
couple of thousand years ago
you see thanks to this driving force
behind it fear every action every
therapy action becomes connected
subconsciously to this fear to
recollection of the possibility of a
short painful and disgusting life so if
you always have this drive based on
negative energy more or less pushing you
the rest of your life to check your
blood glucose seven times a day and it
kind of becomes a burden and thus we say
that we live with a monster on our side
the diabetes monster to me and to many
of us the therapy off the wall becomes
an enemy in my case this enemy took the
form of a diabetes burnout in my case
this diabetes burn applause it for three
years where I didn't test
I hardly measured at all I went to the
doctor and lied I didn't do well I did
abysmal II and I would not suggest it as
a strategy for life but I didn't care
you see I stopped feeling that stuff I
got so used to it it didn't mean
anything to me animal now when you're in
a hypoglycemic episode when you are have
low blood sugar
we call to hypo when you're in a hypo
some stuff happens with the body some
stuff happens with the brain actually
part took once in a clinical trial where
they shoved me into an MRT and checked
my brain out in a hypo it was really
uncomfortable I had to lie there for two
hours but what they found out was kind
of intriguing you see what happened to
me as my brain which only runs on
glucose did not have access to glucose
was that it won't shut down it shut down
the frontal lobe meaning I had no logic
and no empathy
excellent running like light through
life like that right so that's me in a
hypo you don't want to mess with me all
right now these episodes they they can
end up if they we end up with a few
stories of stuff that happens then I'll
go into the more nice ones today like
being arrested in the Sistine Chapel the
security guards thought I was some drugs
I was just in a hypo or a very strange
shape so in a French youth hostel but
that's that's actually I don't want that
on video and so let's get to the next
part right after a few years I got out
of it and how I got out has affected my
life in such a way that is spread to
others how I got out why it was by
starting to treat my therapy like a game
it was not a conscious action that I
started to apply a new methodology of
diabetes treatment no but subconsciously
I started avoiding myself for doing what
I should if I tested once a day for two
days I got an extra beer in the evening
remember I live in Austria and if I did
that for a whole week maybe my
girlfriend would do the dishes on Sunday
team play now these rewards in time
became intrinsic instead of extrinsic
meaning I didn't give myself stuff when
no one else did either but rather I
started feeling something connected to
the therapy actions and thus I got back
into the game now this insight I gained
after years of struggling did not come
on itself
I didn't realize years tundle in a few
years down the line how this had come to
Pauls rather it wasn't a conversation
with Frank gerald and Michael my
co-founders at my sugar we were
discussing about how diabetes therapy
change how it should be easier to work
with the data but actually we realize
that we need to focus on the psychology
on the emotions on the feelings for that
is where the secret lies we wanted to
make it easier for us to live with
diabetes and by making it also engaging
and fun we could flip the therapy we
could enter we could give it like
positive short feedback loops so that
you feel pride instead of you know
defeat that you feel pride when you land
good value after a pizza pizzas are
really vicious for us diabetics if we
can achieve that awesome right now this
thought has become the goal of our work
in our little startup change the
philosophy diabetes therapy or to put it
crudely make it suck less by using games
and modern technology mobile phones and
web browsers can it be that simple can
it work
well we played with that thought for a
while and then we realized that actually
what we're building are medical devices
software as a medical device and that's
a regulated market meaning the FDA DCE
the Argos the TGA all these
organizations we call cruel acronyms
they keep us safe so that no bad medical
devices enter the market and we software
engineers designers want to enter that
good plan so we held back for a while
but we found so many advocates and
supporters and investors that we had to
stalled and the does my sugar was born
now this group of four has grown to
twenty actually more 22 now half of us
would type one diabetes and we give gave
shape to that diabetes monster we always
said we lived with it now lives on the
mobile phones and web browsers it helps
people to keep themselves engaged in
therapy
our knowledge has come to life and into
the pockets of 160,000 people around the
world we have Cee and FDA approvals we
have TGA approvals and whatnot yeah
we've struggled through that regulatory
jungle and we made it now we have even
reached a maturity where public
insurance starts paying for our services
that's the Holy Grail
people can use it for free soon often
reach that goal often we are able to
help someone take back control in the
last few years we've received 14,000
emails from our customers I've replied
to 7,000 of them myself and sometimes it
simply boggles my mind when that monster
first moved into the forearm of one of
my customers then we knew that our
struggles were not for naught but that
we started to actually reach that level
which we strived for to make itself less
to make someone proud of it something
was working
I believe that our little group has been
part of a great evolution of society
look at us today we are the digital
natives and what we've been part of is
this group called digital natives
attacking a new field medicine entering
a regulated markets and striving to
change them it's happening in banking in
space and now also in healthcare to the
digital native knowledge is a click away
we are Wikipedia and Google as is the
possibility to create we can learn to
program why the hell not build rockets
and send two million people to Mars it's
the same way of thinking we allow
ourselves to look into this and we have
the possibility to spread the ideas we
reach these changes already happening
the grassroots are now starting to move
the earth and us the normal people are
stepping up to the plate and taking
control life on this planet will be
exactly also horrible as you allow it to
be the flip side of that is that life
will also be as fantastic as you make it
life like I said is amazing and it is
ours to shape thank
you
This talk was given at a local TEDx event, produced independently of the TED Conferences. As the democratisation of knowledge, ability and reach has struck pretty much all industries of the world, healthcare has long been lagging behind. This to such an extent that those who depend on it now take things into their own hands. After thirty years of living with type 1 diabetes, with all its ups and downs, I was fortunate to meet my cofounders at mySugr – the company which has been our passion and work since 2010. Together we work on changing the philosophy of our therapy – by addressing the psychology of it, using technology and games. Can normal people, like us, be part of changing the world of 400 millions people? I believe that the story I wish to share with you is part of proving the case; that we, the “patients", can affect not only our own lives but the way of the world. Aged four and a half, life changed as Fredrik was diagnosed with type 1 diabetes, a chronic disease affecting some 40 million people in the world. It did not hold him back much on his path in life. As cofounder of both the entrepreneurial organisation STARTeurope and the award winning diabetes services company mySugr, he is driven by a wish to change his immediate world. About TEDx, x = independently organized event In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations)
