Hello everyone my name is nadine
pellen
I’m 40 and if I stand before you
today it is not a martin martin
and translator to tell you everything I
called them in January for him
wish a happy new year and I him
Martine asked what you
translate right now and she told me I
translate conferences guides
they kill know I owe you
admit I take it is not at all
they explain the principle is
simple it is to share an idea
We care
so if I am here today
is to present a topic
Dear to my heart
I CF in my family
two of my aunts died of
this disease in 1953 in the other
1983 and early I wondered
Therefore 9
is it a coincidence is a coincidence
and then that my descendants
will be ready for undergoing this
disease that is the subject of my talk
Cystic fibrosis chance today
coincidence or predestination
we will start by chance I you
Cystic fibrosis talking about but I
could tell you about any other
other disease
charcot sickle cell disease
marie tooth there hemochromatosis little
matter I speak of
cystic fibrosis because that’s what I
know what that prophecy
doses the term is composed of two words
Lucus Street viscous mucus that is
viscous that accumulates in the body
my first attempt died in 1953
She was skinny but had
bloated stomach itself alone
She had diarrhea and
fever
she went to 16 months
we still do not know the disease
Pertussis said the doctor
my second time you were born in 1966
Symptoms were the same all
diarrhea and stomach and skinny
bloated fever
but meanwhile the research had
advanced we saw the name of disease
describe a patient association
it was even gathered last Thursday
but since sick parents
life expectancy was 7 years a
care center was open to
tip of Brittany in Roscoff for
support males
suffering from this disease my second
joël time was fast
directed towards the center to Perharidy
roscoff
he was made to test the test
sweat sweat was very very salty
the diagnosis was
luc to visitors in 1989 there was a
revolution we found the gene encoding
for cystic fibrosis
it’s been a wave of hope in
families we saw what it was that
gene
in fact they were used to preserve
balanced between water and salt in
cells
but if this gene is mutated it works
not well there is an imbalance
Hydration of the mucous LMCU
accumulate and then hello there
infections blocking digestion and
it is therefore the disease was described
the gene has been found but it is
almost 30 years later and heals
still no CF.
Let us not be pessimistic since 2002
2002 all children born in
France are tested to see if they
sick or not
if they are sick they are headed
very quickly towards a care center
specialized to handle them
and then the battle begins all
days and must take
drugs pancreatic enzymes
vitamins antibiotics
they must make the world physio
Rennes this mucus
it is a daily battle and more
it is not physically see the
cystic fibrosis
but with that early treatment
this daily battle and well
Sick won expectancy
life
a child born today
France today its expected
life is 40 years therefore there quickly
for cystic fibrosis
I am healthy carrier of
cystic fibrosis
This is not a chance I’m you
explain how this gene is coming
to me you like well
dragibus that I made a
dragibus based statement
explain how cystic fibrosis
came up – originally in
my family in the family there dragibus
were only yellow dragibus
and then there is a mutation
there are now two-tone dragibus
This is the case of my grandparents they
are both healthy carriers of a
cystic fibrosis gene
this is what happens every
kids design each dad and
Mom gives part
its genetic heritage all
So the first two in the first case
the child is not wearing because he
received a non-mutated gene of each of
her parents take a second case
a third two children were
a mutated gene from their parents are
healthy carriers and in the fourth
quarter
dragibus orange is sick he received
two mutated genes from each of his
Parents of a jet and purpose of each of
parents my grandparents had
five children the first dragibus
orange the second he died
before making the test 3 and 4
dragibus bicolor and the fifth
dragibus his sick orange is the case
my grandparents
This lottery is every pregnancy
each design it
renews take the case of my parents
my mother and not carriers but they
know off
she lived her pregnancies in the
anxiety of giving birth to a child
sick but she was not a carrier
she could not pass the gene
mutated so my dad but healthy carrier
did not know he knew just
he had the remains of probabilities
to have a sick child he conveyed
he was healthy carrier and transmitted
a part
its genetic heritage I
am one of the two right dragibus
since the game supports scene
my parents had three children
it is three carriers is the lottery
each purchase design in France it
are seven thousand patients suffering from
cystic fibrosis and are about 2
million healthy carriers I have the
lucky I dry
most do not know me I
know it’s not by chance that I
saw I know he did what is gene
part of my family history
but the question is is it a
coincidence
is it a coincidence that my great
parents are both carriers
healthy and they had two children
ill in France there is a birth
sick children to birth in 4900
Brittany there was a birth
sick children on about three
thousand births and in Brittany you
gives thousand which department
the incidence is
Finistere is a birth
sick children 1200 birth
in Finistere
a study was done it
reaching between 1946 and 1972
a rise of 377 sick children
birth my grandparents were born
in Canton Bertincourt and bd
funny coincidence 1
I did not want to stop there I know I
supports it’s part of my story
domestic
there are still two highly
impact so that I have ancestors
wear but I wanted to go further
I interviewed doctors
geneticists to know where did
these mutations
nobody told me I suddenly
decided to conduct myself stew
and I enrolled in thesis I
not tell you ten years of research
in five minutes I’ll just
say I have recovered much much
a family of patients
CF
to what end
on this card we see where live
ancestors of carriers of a mutation
very common in Brittany on this
second card
where we see signs live to be
carrying another mutation of the
cystic fibrosis and the third
map
the ancestors of living where we see
third invitation shows that in
up family trees of
sick until the 16th century we see that
according mutations there a
Differential distribution of patients
and their ancestors by mutation
agree very well but I knew
I knew that this card
Breton and migration tissue
ie Carole third century
in Brittany there was virtually
person between the third and
seventh century
there have been very large migrations my
idea so it’s as cystic fibrosis
would come with migrants and is
an absurd control of these mutations in
luggage
which is probably what happened
because the mutation that is found
especially in the west of the department
in northwest
one finds much in the Ireland
funny mutation were found in
Southern Brittany is this mutation
did found that in Bigouden and
in Wales there is surely a
link between these two populations
even between the English Cornwall
and therefore this Armorican Cornwall
happened is that between the
third is the seventh century
there have been great migrations that
were made by clans and migrants
are laid and stayed there for
centuries and centuries without
there have been genetic mixing
I hear you consanguinity
you’ll say no no no I you
stops immediately the mutations
were so present in the
population by lack of brewing
genetic
healthy carriers grew
As to the
generation and chefferies gibus
Orange also by a very large
geographical stability is not a
mix between the clans of migrants I
will show you a map here lived
a couple generations ago this eleven
torque it has over 100 patients in its
descent and lived here when his
generation descendants
generation for what I have in my
database
thus generating 6 5 4 3 2 1
until now we see that we are
here in the presence of stability
Geographic that there was no
genetic mixing and stability
Geographic only result
the dragibus bicolor gaining ground
So sailboats coincidences
but many third
issue that what can we
make
What can we do to stop
it is what it really is
predestined to suffer the
in 1996 was born in paris alas it
had a bloated stomach sweat it
wings and skinny and she
coughed the vein and the diarrhea
Diagnosis is quickly fell co
Away if you followed
his dad and his mom are both
I am carrying myself carrier
because there will not wear but not mom
my grandmother is my rear carrier
grandfather and bring back my
great grandfather also
and this great great grandfather he
has a sister who is a girl who has a
girl who has a son who is the daddy
small to eller born in Paris in 1996
when I had left I thought it was
not possible is not possible
are we going to undergo this
predestination while still
years, centuries and centuries
this chain must stop that
generating transmit in
generation
Today is no drug
modify the mutated gene
cystic fibrosis
but there is a screening carries
healthy it costs about 100 euros
hundred euros
when you have a patient in the family
refunded in the secu I
doing this test I am very happy
when I got married I told my
husband you do too and he did say
noncarriers phew
but if he had done if he was
carrying one would make choices
enlightened life we could have decided
giving birth to a sick child or not
we do not know when I
that we would have had the choice I say no
it takes longer have orange dragibus
it’s because I want to say but I
mean that it is important to
make informed choices
I’m glad I could do this
choice
and when I ask the parents of a
child sick their situation they me
all say if we knew if we had
I knew I have three children they are not
ill
if you have followed since my husband
is not a carrier and leading to the
birth they were detected they
are not sick
I do not know if they are healthy carriers
Apple they can do the test
when they turn 18 but they have
chance to know we have this disease
in the family and they can do
this test this how you are in the
hundred small room and ben are six
of you who are healthy carriers I
Cystic fibrosis
I want my children to their cousins
your children can do their cousins
testing for cystic fibrosis
the test is healthy carrier
and good charcot disease gear marries
tooth sickle cell
all these barbarous names hidden disease
a disease that presents in our
genetic heritage but in ten
fifteen twenty years it will still be there
it must end predestination
in conclusion I would say that
solution exists
this is the test screenings
healthy carriers us his healthy carriers
new parents that transmits the
disease
are we who can stop
how it is simple if you have
sick in your family
even very far away you
have seen well must be taken
go to chu with an advisor
genetic testing for
it’s as simple as that the
knowledge is better than
ignorance is the idea that I wanted
pass before you today and
it’s weird to remember the book
martin ben translated and my conclusion
it joins that of completely
chris anderson
our future belongs to us no matter
what life has given us we can
the shape and can change lives
others also before you leave
I’ll tell you the last things
in haribo
they stopped production
orange dragibus
it is a sign not
[Applause]
pellen
I’m 40 and if I stand before you
today it is not a martin martin
and translator to tell you everything I
called them in January for him
wish a happy new year and I him
Martine asked what you
translate right now and she told me I
translate conferences guides
they kill know I owe you
admit I take it is not at all
they explain the principle is
simple it is to share an idea
We care
so if I am here today
is to present a topic
Dear to my heart
I CF in my family
two of my aunts died of
this disease in 1953 in the other
1983 and early I wondered
Therefore 9
is it a coincidence is a coincidence
and then that my descendants
will be ready for undergoing this
disease that is the subject of my talk
Cystic fibrosis chance today
coincidence or predestination
we will start by chance I you
Cystic fibrosis talking about but I
could tell you about any other
other disease
charcot sickle cell disease
marie tooth there hemochromatosis little
matter I speak of
cystic fibrosis because that’s what I
know what that prophecy
doses the term is composed of two words
Lucus Street viscous mucus that is
viscous that accumulates in the body
my first attempt died in 1953
She was skinny but had
bloated stomach itself alone
She had diarrhea and
fever
she went to 16 months
we still do not know the disease
Pertussis said the doctor
my second time you were born in 1966
Symptoms were the same all
diarrhea and stomach and skinny
bloated fever
but meanwhile the research had
advanced we saw the name of disease
describe a patient association
it was even gathered last Thursday
but since sick parents
life expectancy was 7 years a
care center was open to
tip of Brittany in Roscoff for
support males
suffering from this disease my second
joël time was fast
directed towards the center to Perharidy
roscoff
he was made to test the test
sweat sweat was very very salty
the diagnosis was
luc to visitors in 1989 there was a
revolution we found the gene encoding
for cystic fibrosis
it’s been a wave of hope in
families we saw what it was that
gene
in fact they were used to preserve
balanced between water and salt in
cells
but if this gene is mutated it works
not well there is an imbalance
Hydration of the mucous LMCU
accumulate and then hello there
infections blocking digestion and
it is therefore the disease was described
the gene has been found but it is
almost 30 years later and heals
still no CF.
Let us not be pessimistic since 2002
2002 all children born in
France are tested to see if they
sick or not
if they are sick they are headed
very quickly towards a care center
specialized to handle them
and then the battle begins all
days and must take
drugs pancreatic enzymes
vitamins antibiotics
they must make the world physio
Rennes this mucus
it is a daily battle and more
it is not physically see the
cystic fibrosis
but with that early treatment
this daily battle and well
Sick won expectancy
life
a child born today
France today its expected
life is 40 years therefore there quickly
for cystic fibrosis
I am healthy carrier of
cystic fibrosis
This is not a chance I’m you
explain how this gene is coming
to me you like well
dragibus that I made a
dragibus based statement
explain how cystic fibrosis
came up – originally in
my family in the family there dragibus
were only yellow dragibus
and then there is a mutation
there are now two-tone dragibus
This is the case of my grandparents they
are both healthy carriers of a
cystic fibrosis gene
this is what happens every
kids design each dad and
Mom gives part
its genetic heritage all
So the first two in the first case
the child is not wearing because he
received a non-mutated gene of each of
her parents take a second case
a third two children were
a mutated gene from their parents are
healthy carriers and in the fourth
quarter
dragibus orange is sick he received
two mutated genes from each of his
Parents of a jet and purpose of each of
parents my grandparents had
five children the first dragibus
orange the second he died
before making the test 3 and 4
dragibus bicolor and the fifth
dragibus his sick orange is the case
my grandparents
This lottery is every pregnancy
each design it
renews take the case of my parents
my mother and not carriers but they
know off
she lived her pregnancies in the
anxiety of giving birth to a child
sick but she was not a carrier
she could not pass the gene
mutated so my dad but healthy carrier
did not know he knew just
he had the remains of probabilities
to have a sick child he conveyed
he was healthy carrier and transmitted
a part
its genetic heritage I
am one of the two right dragibus
since the game supports scene
my parents had three children
it is three carriers is the lottery
each purchase design in France it
are seven thousand patients suffering from
cystic fibrosis and are about 2
million healthy carriers I have the
lucky I dry
most do not know me I
know it’s not by chance that I
saw I know he did what is gene
part of my family history
but the question is is it a
coincidence
is it a coincidence that my great
parents are both carriers
healthy and they had two children
ill in France there is a birth
sick children to birth in 4900
Brittany there was a birth
sick children on about three
thousand births and in Brittany you
gives thousand which department
the incidence is
Finistere is a birth
sick children 1200 birth
in Finistere
a study was done it
reaching between 1946 and 1972
a rise of 377 sick children
birth my grandparents were born
in Canton Bertincourt and bd
funny coincidence 1
I did not want to stop there I know I
supports it’s part of my story
domestic
there are still two highly
impact so that I have ancestors
wear but I wanted to go further
I interviewed doctors
geneticists to know where did
these mutations
nobody told me I suddenly
decided to conduct myself stew
and I enrolled in thesis I
not tell you ten years of research
in five minutes I’ll just
say I have recovered much much
a family of patients
CF
to what end
on this card we see where live
ancestors of carriers of a mutation
very common in Brittany on this
second card
where we see signs live to be
carrying another mutation of the
cystic fibrosis and the third
map
the ancestors of living where we see
third invitation shows that in
up family trees of
sick until the 16th century we see that
according mutations there a
Differential distribution of patients
and their ancestors by mutation
agree very well but I knew
I knew that this card
Breton and migration tissue
ie Carole third century
in Brittany there was virtually
person between the third and
seventh century
there have been very large migrations my
idea so it’s as cystic fibrosis
would come with migrants and is
an absurd control of these mutations in
luggage
which is probably what happened
because the mutation that is found
especially in the west of the department
in northwest
one finds much in the Ireland
funny mutation were found in
Southern Brittany is this mutation
did found that in Bigouden and
in Wales there is surely a
link between these two populations
even between the English Cornwall
and therefore this Armorican Cornwall
happened is that between the
third is the seventh century
there have been great migrations that
were made by clans and migrants
are laid and stayed there for
centuries and centuries without
there have been genetic mixing
I hear you consanguinity
you’ll say no no no I you
stops immediately the mutations
were so present in the
population by lack of brewing
genetic
healthy carriers grew
As to the
generation and chefferies gibus
Orange also by a very large
geographical stability is not a
mix between the clans of migrants I
will show you a map here lived
a couple generations ago this eleven
torque it has over 100 patients in its
descent and lived here when his
generation descendants
generation for what I have in my
database
thus generating 6 5 4 3 2 1
until now we see that we are
here in the presence of stability
Geographic that there was no
genetic mixing and stability
Geographic only result
the dragibus bicolor gaining ground
So sailboats coincidences
but many third
issue that what can we
make
What can we do to stop
it is what it really is
predestined to suffer the
in 1996 was born in paris alas it
had a bloated stomach sweat it
wings and skinny and she
coughed the vein and the diarrhea
Diagnosis is quickly fell co
Away if you followed
his dad and his mom are both
I am carrying myself carrier
because there will not wear but not mom
my grandmother is my rear carrier
grandfather and bring back my
great grandfather also
and this great great grandfather he
has a sister who is a girl who has a
girl who has a son who is the daddy
small to eller born in Paris in 1996
when I had left I thought it was
not possible is not possible
are we going to undergo this
predestination while still
years, centuries and centuries
this chain must stop that
generating transmit in
generation
Today is no drug
modify the mutated gene
cystic fibrosis
but there is a screening carries
healthy it costs about 100 euros
hundred euros
when you have a patient in the family
refunded in the secu I
doing this test I am very happy
when I got married I told my
husband you do too and he did say
noncarriers phew
but if he had done if he was
carrying one would make choices
enlightened life we could have decided
giving birth to a sick child or not
we do not know when I
that we would have had the choice I say no
it takes longer have orange dragibus
it’s because I want to say but I
mean that it is important to
make informed choices
I’m glad I could do this
choice
and when I ask the parents of a
child sick their situation they me
all say if we knew if we had
I knew I have three children they are not
ill
if you have followed since my husband
is not a carrier and leading to the
birth they were detected they
are not sick
I do not know if they are healthy carriers
Apple they can do the test
when they turn 18 but they have
chance to know we have this disease
in the family and they can do
this test this how you are in the
hundred small room and ben are six
of you who are healthy carriers I
Cystic fibrosis
I want my children to their cousins
your children can do their cousins
testing for cystic fibrosis
the test is healthy carrier
and good charcot disease gear marries
tooth sickle cell
all these barbarous names hidden disease
a disease that presents in our
genetic heritage but in ten
fifteen twenty years it will still be there
it must end predestination
in conclusion I would say that
solution exists
this is the test screenings
healthy carriers us his healthy carriers
new parents that transmits the
disease
are we who can stop
how it is simple if you have
sick in your family
even very far away you
have seen well must be taken
go to chu with an advisor
genetic testing for
it’s as simple as that the
knowledge is better than
ignorance is the idea that I wanted
pass before you today and
it’s weird to remember the book
martin ben translated and my conclusion
it joins that of completely
chris anderson
our future belongs to us no matter
what life has given us we can
the shape and can change lives
others also before you leave
I’ll tell you the last things
in haribo
they stopped production
orange dragibus
it is a sign not
[Applause]
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