When EDS, Endometriosis, And Policy Meet Care: With Lara Bloom

Framing Complexity And Today’s Focus

SPEAKER_02
0:00

What
happens
when
your
body
doesn't
fit
neatly
into
one
diagnosis
and
care
hasn't
caught
up
yet?
Today
we're
talking
about
Ehlers-Sanlow
syndrome
or
EDS,
endometriosis,
and
the
growing
recognition
that
complexity
isn't
a
flaw,
it's
a
signal.
With
new
diagnostic
guidance
emerging
and
more
people
being
recognized
at
the
intersection
of
connective
tissue,
pain,
and
nervous
system
disorders,
this
conversation
feels
a
little
overdue.
So
stay
with
us
because
this
one's
gonna
connect
a
lot
of
dots.
Welcome
to
Indobattery,
where
I
share
my
journey
with
endometriosis
and
chronic
illness
while
learning
and
growing
along
the
way.
This
podcast
is
not
a
substitute
for
medical
advice,
but
a
supportive
space
to
provide
community
and
valuable
information
so
you
never
have
to
face
this
journey
alone.
We
embrace
a
range
of
perspectives
that
may
not
always
align
with
our
own,
believing
that
open
dialogue
helps
us
grow
and
gain
new
tools.
Join
me
as
I
share
stories
of
strength,
resilience,
and
hope.
From
personal
experiences
to
expert
insights.

Introducing Laura Bloom’s Background

SPEAKER_02
1:38

What
makes
Laura's
work
so
powerful
is
that
it
sits
in
the
intersection
of
medicine,
policy,
and
lived
experience.
She
spent
over
a
decade
pushing
for
patient
engagement
and
global
collaboration.
Work
that's
taken
her
from
grassroots
advocacy
to
advisory
roles
with
organizations
like
the
World
Health
Organization,
Rare
Diseases
International,
and
academic
institutions,
including
Penn
State
College
of
Medicine.
Please
help
me
in
welcoming
Laura
Bloom
to
the
table.
Thank
you,
Laura,
so
much
for
sitting
down
with
me
at
the
table
today.
It
is
an
honor
to
be
able
to
share
this
space
with
you
as
someone
who
not
only
lives
with
uh
EDS,
but
also
as
someone
who
is
exploring
more
about
EDS
and
all
its
nuances,
which
there
are
plenty
of.
So
it's
such
an
honor
to
sit
with
you.
So
thank
you
for
taking
the
time.
Thank
you.
It's
really
great
to
be
here.
You
know,
I'd
mentioned
earlier
that
there's
been
so
many
people
that
have
reached
out
to
me
with
questions
on
EDS
specifically.
And
I
think
to
kind
of
get
a
good
background
in
what
you
do,
can
you
just
kind
of
explain
to
us
who
you
are

Laura’s Diagnostic Odyssey And Pivot

SPEAKER_02
2:44

and
how
you
got
into
this
space
specifically?

SPEAKER_00
2:46

Yeah,
absolutely.
So
I
have
been
working
in
this
space
now
for
around
15
years.
I
had
my
own
diagnostic
odyssey,
uh,
trying
to
find
answers
to
everything
I
was
living
with
uh
for
about
13
years.
Uh
so
I
was
symptomatic
from
the
age
of
11
and
I
wasn't
diagnosed
till
I
was
24.
And
I
was
a
photographer
at
the
time
in
a
very
different
world
to
this,
and
realized
quite
quickly
through
how
I
was
living
and
experiencing
life
as
a
photographer
that
it
really
wasn't
conducive
to
my
symptoms
and
my
pain
and
the
ability
to
stand
for
long
periods
and
carry
uh
uh
carry
heavy
equipment.
So
I
knew
I
had
to
make
a
kind
of
career
shift
and
a
pivot.
And
I've
always
been
very
someone
who's
very
ambitious
and
I
wanted
a
career.
I
wanted
to
do
well
at
something,
I
wanted
to
love
what
I
do.
And
so
the
other
interest
I'd
always
had
is
kind
of
politics
and
international
relations.
And
so
at
30
years
old,
I
took
myself
back
to
university
to
do
a
second
degree
in
global
politics
and
international
relations
with
the
plan
to
do
something
in
that
area.
And
actually,
as
I've
said,
many
people
may
have
heard,
I
actually
wanted
to
be
a
spy.
Now
that
was
the
dream.
Um
so
everything
I
was
doing
was
kind
of
gearing
up
to
doing
that.
And
at
the
same
time,
uh,
so
this
was
kind
of
the
end
of
2009-ish,
things
were
getting
worse
with
my
EDS.
I
was
quite
symptomatic
with
POTS,
and
I
had
never
met
another
person
with
the
condition.
You
know,
I'd
been
diagnosed
at
that
point
for
quite
a
few
years,
and
I
tried
to
look
around
for
anything
that
could
give
me
some
kind
of
support,
some
kind
of
answers
in
the
UK,
and
there
was
nothing.
And
I
ended
up
going
to
the
US
to
an
EDNF
conference,
and
I
met
people
with
the
condition
for
the
first
time,
and
I
was
just
like,
wow,
wouldn't
it
be
amazing
if
there
was
something
like
this
in
the
UK?
And
I
came
home
and
I
spoke
about
it
to
Professor
Rodney
Graham,
who
was
my
doctor
at
the
time,
and
he
said,
What
are
you
talking
about?
There
is
something.
There's
the
Ellis
Dano
Sport
Group.
And
I
said,
Well,
I
didn't
find
them
online,
I
didn't
see
any
events
they
were
doing.
And
they
were
there
on
about
three
or
page
three
or
four
of
Google.
I
finally
found
them
and
reached
out
and
I
left
a
message
on
a
voicemail,

Building UK And Global EDS Advocacy

SPEAKER_00
5:02

and
I
hadn't
didn't
hear
anything
back.
And
I
kind
of
gave
up
thought
of
that.
I
was
like,
okay,
well,
at
least
I
got
to
have
that
experience.
And
then
completely
coincidentally,
I
went
to
a
Getty
Images
uh
gallery
event.
I
worked
at
Getty
Images,
that's
where
I
worked
as
a
photographer
and
in
the
photography
space.
And
I
met
a
friend
of
a
friend
of
a
friend,
like
someone
I'd
never
met
before,
and
we
got
talking,
and
he
said,
How
come
you've
left
Getty?
And
I
said,
Oh,
it's
a
long,
boring
story.
I
have
a
health
condition
you
never
would
have
heard
of.
He
said,
Try
me,
and
I
said,
I've
got
EDS,
and
he
said,
Oh
my
god,
my
daughter
died
of
vascular
EDS
when
she
was
19.
Our
worlds
just
collided
in
that
moment,
and
we
were
just
talking
and
talking.
It
was
the
first
time
he'd
met
another
person
with
the
condition,
first
time
I'd
met
another
person
with
the
condition
in
that
country.
We
just
talked
and
talked,
and
we
both
said
that
we'd
reached
out
to
the
charity
in
the
UK
and
not
heard
anything
back.
And
we
said,
let's
try
again.
He
wanted
to
donate
some
money,
and
I
had
all
these
ideas
of
what
they
could
and
should
do.
And
so
he
said,
Do
me
a
favour,
just
as
a
patient
that
was
searching
for
them,
write
down
on
a
piece
of
paper
everything
that
you
wanted
from
a
UK
charity.
And
so
I
did,
and
then
we
finally
got
hold
of
them
and
met
them
in
a
really
cold
church
hall
in
countryside
in
the
UK,
and
in
my
way,
arms
flapping
everywhere,
I
was
like,
I
think
you
should
do
this,
and
I
think
you
should
do
that,
and
I
think
you
should
change
your
name
to
EDS
UK.
I
never
found
you
online.
I
think
you
need
Facebook
pages,
I
think
you
need
hoodies,
I
think
you
need
conferences,
and
just
reeled
off
all
these
ideas.
And
at
the
end
of
my
spiel,
this
gentleman
said,
Well,
I
know
I've
wanted
to
donate
some
money,
and
I
know
you're
about
to
embark
on
a
degree
and
you
wanted
some
part-time
work.
So
how
about
I
fund
your
salary
for
the
length
of
your
degree
and
you
do
everything
you
can
to
help
them,
you
know,
check
off
some
of
the
items
on
this
list.
And
I
was
like,
Whoa,
you
know,
I
have
no
experience
in
that.
I've
never
done
anything
like
it
before.
And
he
said,
Well,
you
know,
ultimately,
you
know,
who
better
than
someone
that
knows
what
the
need
is?
And
that
was
really
my
first
notion
of
the
power
of
lived
experience
in
that
moment,
that
it
can
actually
bring
so
much
and
have
so
much
value.
And
that
was
15
years
ago,
nearly
16
years
ago
now,
um,
that
that
happened.
I
ended
up
running
EDS
UK.
We
ended
up
going
from
just
me
uh
and
to
a
team
of
I
think
six
people
when
I
left.
2015,
when
I
did
finally
leave,
it
was
because
I
realized
that
to
try
and
fix
this
systemically,
we
needed
to
look
at
it
through
a
global
lens.
And
so
along
with
EDNF,
we
set
up
the
Atlas
Daniels
Society,
um,
which
this
year
has
its
10-year
anniversary.
Um,
and
I
guess
I
never
did
become
a
spy,
or
this
is
the
best
cover
story
in
the
world.
So
you
choose
which
one.
But
I
I
love
my
career,
I'm
very
grateful
for
it.
I
can't
believe
along
the
way
I
became
a
professor,
CEO,
uh
running
a
global
organization.
We
have
a
team
of
40
people
now
working
with
us.
It
really
is
a
dream
come
true,
and
I
pinch
myself
every
day.
But
ultimately
it
all
started
with
lived
experience.

SPEAKER_02
8:09

Yeah,
I
mean,
I
I
feel
that
to
my
bones
as
someone
who
runs
a
nonprofit
myself,
just
how
far
passion
can
take
you
when
you
have
lived
experience
because
you
we
want
to
make
it
so

Purpose, Burnout, And What Sustains The Work

SPEAKER_02
8:21

much
better
for
the
next
generation.
What
keeps
you
grounded
in
this
work
though?
Because
it
is
exhausting.
That
is
one
of
the
things
that
I've
learned
the
last
couple
of
years
in
starting
charity
work
is
that
it's
exhausting.
What
keeps
you
grounded
in
this?

SPEAKER_00
8:32

It's
really
hard
to
say
really
what
kind
of
does
keep
you
grounded,
but
I
think
it's
the
passion.
And
you
know,
I
I've
spoken
to
a
lot
of
people
on
nonprofit,
and
this
is
saying
that
once
you
start
working
for
a
nonprofit,
it's
addictive
and
you
can't
go
back
from
that
world
because
doing
a
job
that
you
get
paid
for
that
actually
helps
people.
I
mean,
why
else
would
you
want
to
do
anything
else
in
this
world?

SPEAKER_02
8:54

Right.

SPEAKER_00
8:54

And
there
is
so
much
need,
and
there
it
was
so
embryonic
when
I
came
into
this,
considering
it's
a
disease
that's
been
around
for
God
knows
how
many
years.

SPEAKER_02
9:04

Right.

SPEAKER_00
9:05

So
much
that
had
to
be
done,
and
I
felt
perhaps
naively
that
I
could
actually
help
and
I
could
fill
some
of
those
gaps
and
address
some
of
those
needs.
And
it's
really
been
with
a
lot
of
you
know,
talk,
whatever
you
want
to
call
it,
that's
got
me
here.
But
I've
had
a
really
clear
vision
of
what
was
needed.

unknown
9:22

Yeah.

SPEAKER_00
9:22

And
I
knew
that
it
needed
collaborators
and
it
needed
multiple
people
around
the
table.
This
is
by
no
means
my
solo
quest,
far
from
it.
If
it
wouldn't,
it
takes
a
village,
that's
saying,
and
it's
so
true.
And
without
the
incredible
doctors,
community
members,
staff
members,
I
mean
volunteers,
everyone
and
anyone
in
between
that's
made
this
possible.
But
it
has
to
start
with
a
vision,
and
that's
something
that
I
was
able
to
have
and
still
do
have
such
a
clear
vision
of
where
we
need
to
keep
going
and
getting
to.
And
luckily,
people
have
aligned
with
that,
and
it's
you
know,
it's
coming,
it's
coming
together.
But
I
think
I'm
a
little
bit
of
a
workaholic.
My
wife
tells
me
I
am.
It's
very,
like
I
said,
addictive.
Um
and
I
love
it.
God,
I
love
it.
I
just
I
love
the
people
I
get
to
work
with,
all
of
them.
There's
just
no
exception.
I
have
the
most
amazing
team,
external
stakeholders
that
I
get
to
work
with
more
in
the
patient
engagement
space,
incredible
people,
our
healthcare
professionals,
academics,
clinicians,
researchers,
amazing
people.
You
know,
it's
just
a
joy
to
turn
up
to
work
every
day.
And
I
get
so
much
fulfillment
out
of
it,
and
it's
incredibly
satisfying.
So
that
you
know,
I
just
had
two
weeks
off
for
Christmas
with
family,
and
I
could
not
wait
to
get
back
to
work.
And
that's
no
reflection
on
my
family.
I
love
them.
I
was
so
excited,
and
how
wonderful!
Because
it
is
exhausting.
The
hours
are
ridiculous.
I
travel
so
much,
I
have
I
make
so
many
compromises,
I
miss
out
on
things.
And
if
I
didn't
love
it,
that
would
be
really
challenging.
But
I
never
feel
it
because
I
love
it
so
much.

SPEAKER_02
10:56

I
think
that's
similar.
You
know,
I
think
there's
there's
something
to
be
said.
This
work
asks
people
to
stay
present
with
complexity
and
to
not
look
away.
And
I
think
that
it's
really
hard
to
look
away
when
there's
so
much
work
to
be
done
in
a
space
which
oftentimes
gets
ignored
in
the
bigger
scheme
of
the
medical
system.
And
so
I
think
that's
why
for
many
of
us
who
have
this
passion
for
these
conditions
that
are
hard
to
understand
for
many
people,
it
keeps
that
that
drive
going
forward.
But
it
yeah,
it
long
hours,
a
lot
of
long
hours.
And
you're
still
a
spy,
you're
just
using
your
investigative
spy
skills
in
a
different
way.

EDS And HSD 101: Types And Criteria

SPEAKER_02
11:40

Yeah.
Can
you
give
us
just
a
quick
overview
of
EDS
and
what
it
is
and
how
the
different
subtypes
vary?
Brief
overview
of
that
so
that
we
have
a
good
groundwork
moving
forward.

SPEAKER_00
11:53

Absolutely.
So
there's
the
Ellis
Downlos
syndromes
and
there's
hypermobility
spectrum
disorders.
And
EDS,
there's
13,
14
types,
depending
on
what
paper
you
read.
But
the
27
type
uh
2017
criteria
is
13
types
of
EDS,
all
of
them
but
the
hypermobility
type
are
rare
and
ultra-rare,
and
we
know
the
pathogenics
of
the
disease-causing
variant
in
those.
You
can
have
a
genetic
test
to
get
diagnosed
with
them.
But
the
hypermobile
type,
although
there's
been
a
lot
of
advancement
in
that
area,
we
still
don't
yet
know
the
marker
behind
it,
and
we
also
believe
it's
not
rare.
So
that
one
is
quite
prevalent,
as
with
the
same
with
HSD.
And
there's
also
been
a
huge
body
of
work
going
into
at
the
moment
actually
seeing
if
heads
and
HSD
are
one
in
the
same
condition.
And
it's
thought
from
early
outcomes
of
that
research
that
they
are,
and
they
sit
on
a
spectrum
that
they
are
one
condition,
and
that
will
all
be
published,
and
uh
we
will
have
an
updated
diagnostic
criteria
for
all
of
EDS
and
HSD
in
December
of
2026
this
year.
Um
got
to
get
used
to
saying
this
year.
Um,
so
that's
really
exciting
because
we've
waited
since
2017
for
that,
and
prior
to
that
we
waited
two
decades.
So
um
we're
really
ramping
up
how
often
these
get
done
and
giving,
I
think,
the
community
what
they
need,
which
is
answers
and
more
clarity,
because
the
2017
criteria
is
far
from
perfect.

SPEAKER_02
13:14

Yeah.
Why
what
do
you
think
is
the
biggest
misunderstanding
about
hypermobility
and
why
it's
minimized?

SPEAKER_00
13:22

I
think
historically
hypermobility
has
been
seen
to
be
something
quite
benign.
And
it's
really
difficult
to
educate
people,
but
it's
even
harder
to
re-educate
people
as
to
what
it
actually
means.
And
what
do
we
mean,
you
know,
by
EDS
and
HSD?
Well,
largely
it's
it's
a
connective
tissue
condition,
which
we
believe
is,
well
we
know
for
the
rarer
types
is
is
genetic,
and
we
believe
there
is
an
element
of
it
that
could
be
genetic
with
hypermobile
EDS
and
HSD
as
well,
but
we
have
yet
to
prove
that.
And
it
impacts
everything
from
your
head
to
your
toe
and
all
the
systems
in
between.
And
you
see
a
lot
of
comorbidities,
some
consistently
seen,
others
not
so
consistently
seen.
And
it's
hard
to
always
know
what
are
related
to
EDS
and
HSD
and
what
are
just
occurring
in
the
population.
But
there
is
this
sense
that
it
just
means
you're
a
bit
bendy.
And
we
know
now,
and
there's
a
ton
of
published
evidence
out
there
that
tells
us
it's

Hypermobility Myths And Systemic Impact

SPEAKER_00
14:18

much,
much
more
than
that.
It's
you
know,
GI
issues,
it's
ENT
issues,
it's
mast
cell
issues,
it's
bladder
issues,
it's
you
know,
gyne
issues,
it's
it's
really
so
many
different
things.
And
within
each
of
those
is
a
spectrum
and
it
affects
people
differently.
Yeah.
And
then
of
course,
that's
that's
largely
hypermobile
EDS
and
E
and
GSD.
And
then
with
the
rarer
types,
there's
obviously
a
lot
more
severe
complications
that
you
can
see
as
well.

SPEAKER_02
14:43

Yeah.
And
I
think,
you
know,
we're
seeing
more
people
being
diagnosed
with
both
endometriosis
and
EDS,
often
alongside
POTS
and
mast
cell
activation.
What's
the
current
understanding
of
why
these
conditions
overlap
so
often?
Is
it
connective
tissue
dysfunction
that's
being
shattered
and,
you
know,
stretched,
or
do
we
know?

SPEAKER_00
15:04

Well,
I,
from
personal
experience,
I
wish
we
knew.
I
was
diagnosed
with
endometriosis
before
my
EDS.
Um,
I've
had
multiple
surgeries.
I
had
my
bowel
stuck
to
my
uh
pelvis
on
one
occasion
and
had
to
have
surgery
for
that.
And
it
it's
always
not
really
been
understood
why
there
is,
or
if
there
is
actually
any
correlation,
or
we're
just
picking
up
anecdotally,
you
know,
two
occurring
things.
But
then
you
go
back
to
the
fact
that
if
we're
talking
about
connective
tissue
adhesions,
all
those
things,
you
know,
is
there
something
that
could
be
behind
that?
Because
we
do
see
a
prevalence
of
that,
and
we
can't
explain
it
or
understand
it.
And
the
answer
always
is
more
research
is
needed.
And
so
it's
finding
funding
to
do
that
research.
And
but
it's
very
hard
even
to
do
that
research
without
knowing
cause.
So
you
can
through
data
perhaps
say
there
is
a
prevalence,
but
you
can't
say
why.
And
until
we
understand
the
cause,
and
there
is
a
lot
of
really
exciting
research
coming
out
around
immune
dysregulation
and
understanding
that,
and
I
think
that's
going
to
yield
a
lot
of
answers
for
us
long
term.
And
perhaps
once
we
have
more
answers
in
that
area,
we
can
start
to
look
into
these
more
nuanced
comorbidities
that
we
see.
You
know,
it's
my
personal
experience.
I
had
endometriosis
from
a
young
age,
I
had
polycystic
ovras
as
well,
and
I've

Overlap With Endometriosis, POTS, MCAS

SPEAKER_00
16:26

grown
out
of
both.
Why?
Is
there
a
reason?
Did
I
start
doing
something
holistically
for
my
EDS
that
actually
in
turn
helped
um
my
endometriosis?
I
don't
know,
and
it's
very
hard
to
know.
I
was
on
DiNet
on
the
pill
for,
you
know,
many
years,
15,
20
years,
and
then
stopped
and
have
only
recently
in
the
last
few
years
started
having
periods
again
and
been
okay
with
that.
So
it's
it's
very
odd
to
me
why
that's
changed
over
my
lifetime.
Um
and
I
don't
have
any
answers
for
that
in
order
to
doctors,
other
than
great
news.
Um,
and
it
is,
it's
great.
But
is
there
a
pattern
to
that?
Have
I
started
doing
something
that
helps
my
EDS
that
actually
has
helped
that?
Who
knows?
It's
difficult.

SPEAKER_02
17:10

Well,
and
part
of
that
too
with
endometriosis
is
because
it
is
so
inflammatory.
You
know,
we
talk
about
inflammatory
or
nervous
system
dysregulation
that
factor
into
pain
and
inflammation
and
fatigue.
And
there's
a
lot
of
cross-section
with
endometriosis
symptoms
and
EDS
symptoms.
And
I
think
that
we
oftentimes
don't
recognize
or
we
can't
recognize
the
difference
between
the
two
because
they
kind
of
correlate
together.
My
personal
experience
included
in
that,
because
I
was
diagnosed
with
endometriosis
long
before
I
was
ever
diagnosed
or
even
heard
of
EDS.
And
so
for
me,
it
was
very
much
in
that,
you
know,
understanding
one
disease
beget
understanding
another
disease.
And
it
was
very
nuanced
to
a
lot
of
people
and
still
is
very
nuanced
to
a
lot
of
people
in
trying
to
understand
and
I
don't
want
to
say
separate,
but
see
this
as
something
more
than
just
being
bendy
or
just
having
a
period
problem,
which
is
we
know
it's
a
systemic
issue.
And
so
with
both
being
a
systemic
issue,
I
think
it's
becoming
a
lot
more
talked
about
in
the
inflammatory
state
and
you
know,
the
gut
microbiome
and
all
this
other
stuff.
There's
a
lot
of
conversation
surrounding
this,
which
is
exciting
to
hear
more
than
just
what's
been
done
in
the
past.
I
think
we're
looking
at
this
more
holistically,
which
is
exciting
to
me
to
be
able
to
see
that.
But
I'm
right
there
with
you
in
that
in
that
process
for
sure.

SPEAKER_00
18:37

Yeah.
I
think
it,
you
know,
there's
there's
so
much
holistically
that
you
can
do
to
help
your
symptoms.
And
I
think
that
that
comes
with
privilege.
So
I
spend
a
fortune
keeping
myself
well
and
how
privileged
I
am
to
do
that.
Most
people
cannot
afford
to
do
that.
I
have
access
to
the
world's
greatest
mind
in
these
conditions
that
I
can
chat
with
over
coffee.
No
one
has
that
really
at
their
fingertips.
And
and
I'm
not
talking
about
me
as
a
patient
to
them,
but
you
just
by
talking
about
the
condition,
you
are
you
are
then
gaining
knowledge
that
can
help
you
in
your
journey.
And
you
know,
I
never
forget
the
privilege
I
have
in
my
position.
And
that's
why
when
people
say,
How
do
you
live
the
quality
of
life
that
you
lead?
Privilege,
honestly.
Um
and
I'm
not
a
very
financially
privileged
person
at
all,
but
the
things
I
can
afford
private
healthcare
in
the
UK,
if
I
relied
relied
on
the
NHS
for
anything,
even
my
endometriosis,
I
would
have
been
screwed,
honestly.
Right.
Yeah.
All
my
care,
other
than
acute
issues
that
I've
had
over
the
years,
thankfully,
not
many,
have
been
privately.
I
can
get
scans
tomorrow.
I
can
get
an
upright
MR
MRI
to
check
things
next
week.
And
like
there's
people
having
to
travel
out
of
the
country
to
do
that,
and
it's
not
fair,
and
it's
not
equitable.
And
so
I
am
not
a
good
example
of
what
is
usual
in
this
condition.
I
get
To
afford
to
buy
supplements.
And
I
recently
started
testosterone

Privilege, Access, And Self‑Management

SPEAKER_00
20:07

gel
because
my
testosterone
is
so
low.
I
had
the
privilege
of
knowing
that
because
I
paid
for
a
blood
test.
And
I
would
never
have
known
other
than
that.
And
that's
being
looked
at
anecdotally
that
that
could
be
a
management
tool
in
EDS
because
anecdotally
they
saw
in
trans
clinics
that
female
to
male
trans
patients
improve
so
much
because
of
their
testosterone
that
we
now
want
to
do
research
to
find
out
could
a
very
low
dose,
I'm
on
a
very,
very
low
dose
of
gel
at
you
know
every
few
days,
but
it
has
made
a
difference
of
my
ability
at
the
gym,
of
my
energy,
and
I
have
to
pay
for
that.
And
it's
not
cheap.
And
you
know,
all
of
these
things
come
at
a
cost,
and
we
shouldn't
be
the
ones
to
bear
it.
I
have
to
sacrifice
so
many
things
to
keep
well,
you
know,
the
gym
membership,
all
you
know,
saurnering,
all
these
things
that
and
it's
not
also
just
a
financial
privilege,
but
it's
a
time
privilege,
you
know.
So
the
time
it
takes
for
me
to
be
able
to
fit
that
into
a
working
day,
I
have
to
get
up
at
the
crack
of
dawn.
And
it's
just
relentless.
And
it's
so
hard,
it's
so
much
hard
work
to
keep
well.
And
I
think
people
who
have
the
luxury
of
health
don't
realize
what
it
takes
to
live
with
a
chronic
condition
and
the
upkeep
financially,
physically,
emotionally,
and
mentally
to
stay
on
top
of
it.
And
it
is
so
much
easier
to
eat
what
you
want,
not
go
to
the
gym,
not
sleep.
Like
I
run
my
body
like
a
machine
to
function
the
way
I
do.
I
have
to
have
seven
to
eight
hours
sleep.
Like
I'm
an
I'm
so
like
my
aura
ring.
I'm
like,
has
it
am
I
okay?
Like
it
tells
me
before
I
know
how
I'm
feeling.
My
my
fluids,
you
know,
I've
got
all
my
different
drinks
on
the
table,
and
you
know,
like
what
I'm
drinking,
what
I'm
eating.
I
I
eat
like
really
boring
stuff,
the
same
thing
every
day.
I'm
all
about
the
microbiome
at
the
moment.
So
I'm
really
focused
on
the
blue
zones
diet,
beans,
seeds,
nuts,
you
know,
largely
plant-based.
And
that's
really
what's
made
me
feel
so
much
better.
And
in
the
last
year,
it's
been
quite
dramatic,
the
difference
that
I've
felt.
And
I'm
nearly
46
now,
and
on
paper,
what
I
what
is
wrong
has
increased.
But
the
reality
is
I've
got
a
much
better
quality
of
life
because
of
the
things
I've
been
able
to
do
with
it,
and
it's
just
so
frustrating
in
the
seat
that
I
I'm
in
to
look
around
the
world
and
see
that
I
am
probably
in
the
1%
of
people
who
are
able
to
tackle
those
things
in
the
way
that
I
do.
And
it's
unfair
and
it's
not
how
it
should
be.
And
that
is
why
I
work
myself
to
the
bone
to
try
and
make
it
more
equitable
and
fairer
for
people
to
also
be
able
to
access
those
things.

SPEAKER_02
22:48

Yeah,
I
and
that
is
exactly
where
I'm
at
with,
you
know,
even
in
my
care,
the
privilege
behind
it,
the
fact
that
I
get
to
do
this
and
I,
you
know,
to
be
able
to
talk
about
it
and
to
be
able
to
navigate
this
care
in
a
way
that
most
people
aren't
going
to
be
able
to.
And
part
of
that
is
that
knowledge,
right?
Part
of
that
is
the
understanding
of
the
various
ways
that
you
can
live
with
it
and
understanding
the
disease
at
its
core,
right?
And
I'm
very
privileged
in
that.
And
and
same
with
you.
I
mean,
I
see
myself
so
much
in
what
you're
saying
because
just
like
you,
we
become
we're
professional
patients
in
a
way,
right?
We
will
never
be
100%
what
society
calls
100%.

SPEAKER_01
23:31

Yeah.

SPEAKER_02
23:31

Our
100%
looks
way
different
than
someone
else's.
And
oftentimes
I'm
happy
with
80%,
if
we're
being
honest,
you
know.
And
so
I
think
from
from
that
perspective,
it's
such
a
luxury
to
have
knowledge
and
it
shouldn't
be
that
way.
Knowledge
is
absolutely.
Absolutely.
And
the
ability
to
do
something
with
that
knowledge,
you
know,
I
think
that
is
part
of
the
struggle
when
you
have
things
like
endometriosis
and
EDS,
is
that
we
have
this
knowledge,
but
what
do
you
do
with
it
when
it's
such
a
costly
endeavor
just
to
live
and
survive?
And
like
you
said,
time,
money,
management,

Individualization Over One‑Size Advice

SPEAKER_02
24:10

all
of
it.
It
takes
so
much
to
just
survive
on
the
day-to-day.
And
to
have
that
privilege,
I
don't
take
that
for
granted
at
all.
That
is
a
huge,
huge
privilege
to
have
that,
you
know.
But
I
think
I'm
hopeful
that
maybe
there's
ways
that
we
can
make
it
more
accessible
to
others,
which
is
why
I'm
sure
for
you,
why
you're
doing
this
and
why
I
get
to
do
this
is
so
that
I
can
make
it
more
accessible
to
others
in
a
way
that's
tangible.
You
know,
I'm
just
I
love
hearing
that
from
your
perspective
too.
So
I
just
like,
oh
gosh,
you
I
you
stole
the
words
right
out
of
my
mouth.

SPEAKER_00
24:43

It's
really
hard.
And
it's
really
hard
when
you
have,
you
know,
a
presence
on
social
media,
for
example,
and
you
have,
you
know,
I've
got
a
quite
a
few
followers
on
Instagram.
And
I
have
to
think
so
carefully
about
what
I
post
because
the
second
I
post
even
a
screenshot
of
a
meal
I've
just
eaten
without
thinking,
everyone's
like,
where
did
you
get
this?
Where
did
you
know?
I
posted
my
walking
pad
and
my
desk
the
other
day.
Can
you
send
me
links
to
the
walking
pad
and
the
desk
you
and
I'm
like,
ah,
you
know,
and
and
it's
people
think
that
if
they
then
do
exactly
what
you've
done
with
exactly
the
same
tools,
that
they
will
be
okay.
And
everyone's
experience
is
so
different,
and
it
really
isn't
a
given.
You
know,
that
there's
people
that
their
lives
have
changed
with
yoga
or
swimming.
I
I
couldn't
feel
worse
when
I
go
swimming,
like
it's
just
the
worst
thing
for
me,
and
yet,
published
and
anecdotally,
so
many
people
benefit
from
it,
and
you've
got
to
find
what
works
for
you,
and
so
there's
such
power
in
in
the
position
I
have
that
I
have
to
be
so
careful
of
because
people
will
think
that
my
experience
is
what
they
should
do,
and
you've
really
got
to
take
responsibility
in
that
and
ensure
that
you're
always
saying,
This
is
my
personal
experience,
please
consult
a
medical
professional
because
I
know
from
experience
that
everyone
is
different,
and
even
beans,
for
example,
like
a
lot
of
people
with
EDS
have
IBS,
GI
issues.
Some
people
that
eat
the
level
of
beans
I
eat,
you
know,
and
it
took
me
time.
Don't
get
me
wrong,
like
sometimes
it's
not
pleasant,
but
like
you
know,
it
can
really
impact
people's
mast
cell
and
GI
and
and
bad,
you
know,
microbiome
in
a
bad
way.
And
so
you've
got
to
find
what
works
for
you
and
not
be
reliant
on
forums
and
social
media
to
define
exactly
what
you'll
do.
They
should
inform
you
so
that
you
know
what
your
choices
and
options
are
for
the
you
then
to
work
out
and
try
what
works
for
you.
But
ultimately,
we're
living
with
a
condition

Health Systems Built For Acute, Not Chronic

SPEAKER_00
26:35

that
has
no
therapeutics,
it
has
no
medication.
There's
lots
of
management
that
can
be
done,
but
until
we
know
what's
causing
it,
we
can't
work
out
how
to
treat
it.
So
we're
closer
than
ever
before,
but
there's
still
yet
time
that
we
would
need
to
wait.
I
think
at
least
a
couple
of
years.
Yeah.
Until
we
really
have
true
answers,
true
testing,
where
we
move
from
the
gray
into
what
we
should
be
with
our
logo,
which
is
black
and
white.

SPEAKER_02
27:02

Well,
and
I
do
think
like
a
lot
of
healthcare
tries
to
make
it
so
standardized
that
they're
missing
a
lot
of
those
nuances
between
people.
Like
we
are
so
individualized
in
our
care,
or
should
be,
right?
In
what
some
people
have
success
with
and
what
others
have
success
with.
And
I
think
a
lot
of
the
health
system
misses
that
individualization
of
healthcare
and
trying
to
symptomatically
even,
you
know,
well,
that
doesn't
sound
like
EDS
or
that
doesn't
sound
like
endometriosis
because
it's
not
this,
it's
not
X,
Y,
and
Z.
And
and
they
don't
always
look
the
same
for
everyone,
and
that
you
can't
treat
them
the
same
for
everyone.
The
same
treatment's
not
going
to
be
effective
for
one
as
it
is
for
the
other.
And
so
the
nuances
of
that
I
think
are
are
challenging
and
you
know,
something
that
you
had
mentioned
earlier
is
that
these
guidelines
are
shifting
and
changing.
And
can
you
give
us
any
light
into
how
that
is
shifting
and
changing
to
encompass
just
the
various
aspects
of
living
with
EDS?

SPEAKER_00
28:08

Sure.
I
think,
you
know,
firstly
to
echo
what
you're
saying,
our
healthcare
systems
globally
are
built
for
the
acute
and
not
the
chronic.
And
that's
fundamentally
the
problem
we
have
when
it
comes
to
pathways
and
funding
and
the
reality
of
how
things
are.
And
that's
not
unique
to
EDS.
That's
with
a
lot
of
rare
and
chronic
conditions.
We
are
just
not
serviced
in
the
way
we
should.
So
the
criteria
can't
solve
that.
But
what
the
criteria
hopes
to
do
is
make
it
a
lot
easier
for
people
to
be
diagnosed
when
their
symptoms
begin.
As
part
of
this
publication,
we're
also
going
to
be
publishing
diagnostic
pathways,
which
are
ultimately
red
flag
pathways
to
get
people
to
where
they
need
to
get
to.
Primary
care
can
be
diagnosing
EDS.
You
know,
there
is
no
such
thing
as
an
EDS
expert.
It's
someone
that's
willing
to
learn
and
listen.
And
that's
really
all
it
all
there
is
to
it.
So
we
hope
when
we
we're
armed
with
this
new
criteria,
we
are
spending
more
time
and
money
than
we
ever
have
on
disseminating
out
to
who
needs
to
hear
it.
On
a

What The 2026 Criteria Aims To Fix

SPEAKER_00
29:06

policy
level,
on
a
healthcare
systems
level,
on
a
healthcare
education
level,
we
really
are
going
all
out
because
there
is
still
just
dire
lack
of
awareness,
education,
understanding,
belief,
validation.
I
mean,
everything.
It's
just
uh
crazy
that
we
are
still
in
the
time
that
we
are,
you
know.
Celebrating
our
10-year
anniversary,
yeah,
you
can
see
a
big
spit
spike
since
we'd
launched
of
many
things,
but
are
systemically
things
different?
No.
And
that's
really
heartbreaking
actually.
Um,
because
you
want
to
do
more,
but
you
have
to
accept
the
challenges
we
have
and
the
barriers
we
have
and
keep
going,
keep
fighting.
I'm
optimistic
and
hopeful
about
the
criteria.
I
think
it's
going
to
be
looking
at
bringing
in
comorbidities
for
the
first
time,
which
I
think
is
much
needed,
and
representing
really
the
reality
of
what
people
live
with
and
are
facing
and
make
it
easier
to
get
diagnosed
by
any
healthcare
professional.
That's
the
hope.
You
know,
if
we
can
get
to
a
world
where
people
are
diagnosed
when
their
symptoms
begin,
then
I
think
the
outcomes
of
life
quality
and
in
some
cases
with
the
other
types
expectancy
will
be
much,
much
better.

SPEAKER_02
30:13

Yeah.
How
have
patient
voices
in
lived
experience
shaped
these
updates?

SPEAKER_00
30:18

Oh,
hugely.
So
we
have
um
members
on
the
Road
to
2026
committee,
myself
included,
who
have
lived
experience
and
at
least
three
others.
Um,
we
have
done
a
survey
to
the
community
of
nearly
2,000
people
bringing
in
their
experiences
in
all
areas
of
living
with
this
condition,
financially,
emotionally,
physically,
you
know,
everything,
um,
which
is
being
published
as
part
of
this.
So
that's
really
a
key
part.
The
consortium
are
the
people
that
are
writing
these
updates,
and
in
every
single
working
group
of
the
consortium
is
a
lived
experience
voice
as
well.
So
that's
been
part
of
it.
Um,
and
many,
many,
many
of
our
healthcare
professionals
live
with
the
condition
too.
So
we've
done
Delphi's
and
we've
done
various
things,
and
it's
reached

Lived Experience Shaping New Guidance

SPEAKER_00
31:03

people
living
with
it
and
caring
for
people
living
with
it.
So
we're
proud
of
how
we
have
incorporated
lived
experience
into
this
entire
process.

SPEAKER_02
31:11

Yeah.
And
I
think
hearing
that
voice
of
the
patients
makes
it
that
much
more
impactful.
I
mean,
you
can't
learn
if
you're
just
going
into
it
on
a
clinical
basis
without
listening
to
the
patients,
and
that's
across
the
board.
What's
one
of
the
biggest
misconceptions
about
diagnosing
EDS
and
hypermobility?
You
hope
the
guidance
finally
corrects.
You
said
that
primary
care
can
do
it,
but
is
there
like
a
diagnostic
criteria
that
is
changing
that
will
help
some
of
that
misconception?

SPEAKER_00
31:40

I
think
at
the
moment,
when
when
unknowing
primary
care
doctors
or
any
discipline
really
here
EDS,
they're
scared
off
by
it
and
they
push
them
in
the
direction
of
the
geneticists.
And
at
the
moment,
for
head
and
HSD,
they
shouldn't
be
seeing
geneticists.
That's
not
the
area
of
medicine
they
should
be
going
to
because
we
don't
have
a
genetic
test
yet.

SPEAKER_02
31:59

Right.

SPEAKER_00
31:59

So
we
want
people
being
pointed
to
the
areas
that
their
symptoms
are
in
and
to
primary
care
and
to
generalists.
So
I'm
hopeful
that
this
will
scare
people
less
and
make
it
more
accessible
and
less
of
an
overwhelming
thing
to
deal
with.
I
think
also
if
we
remove
that
stigma
of
rare
from
heads
and
HSD,
it
will
make
it
more
accessible
to
people.
I
think
when
people
think
rare
to
rare
disease,
and
heads
and
HSD
aren't.
And
the
purpose
of
those
red
flag
pathways
are
to
point
those
living
with
the
rare
and
monogenic
types
to
experts
and
specialists
and
geneticists
because
that
is
absolutely
what's
needed.
So
it
kind
of
filters
out
the
people
that
should
maybe
scare
you
and
overwhelm
you
and
leave
you
with
the
people
that
you
can
absolutely
manage.
So
that's
the
hope
that
I
I
believe
will
come
from
this.

SPEAKER_02
32:49

Yeah.
Well,
and
I
and
talking
about
those
that
are
a
little
more
rare,
we're
also
hearing
more
about
like
the
vascular
compression
syndromes
like
Mae
Thurner
or
Nutcracker.
Are
those
part
of
the
evolving
picture
as
well?
Or
is
that
a
different
subset
completely?

SPEAKER_00
33:04

So
it's
a
tough
one,
that
because
we
are
hearing
it
more,
but
we
can't
explain
why.
And
again,
are

Primary Care’s Role And Red Flags

SPEAKER_00
33:10

we
actually
talking
about
such
a
prevalent
condition
that
it's
not
prevalent?
You
know,
it's
like
mitral
valve
prolapse.

SPEAKER_02
33:16

Right.

SPEAKER_00
33:16

Did
we
just
find
it
because
people
were
being
scanned
versus
it
actually
being
associated
with
EDS?
So
it's
the
same
with
these
other
things
that
more
research
needs
to
be
done
to
understand
is
this
a
sub
subtype?
Is
it
a
a
smaller
collection
of
people
where
you
see,
you
know,
it
presented
X,
Y,
and
Z.
All
of
that
work
will
be
post
this
publication,
I
believe.
This
is
going
to
give
us
the
framework
of
how
we
then
move
forward.
But
even
with
all
the
biomarker
work
that's
coming
with
Het
and
HSD,
we
know
that
there
will
probably
be
a
lot
more
categorizing
and
phenotyping
and
types
that
come
beyond
this
classification
because
of
the
work
that's
being
done.
So
it's
a
little
bit
of
we
have
to
be
patient.
We're
not
gonna
get
to
everywhere
like
this
publication,
we're
gonna
get
a
much
further
than
where
we
are
now.

SPEAKER_02
34:06

Yeah,
and
that's
helpful.
How
should
how
should
clinicians
actually
use
the
guidance
in
practice?
I
mean,
that
diagnostic
process
is
is
challenging.

SPEAKER_00
34:15

Yeah,
so
we're
gonna
have
this
pathway
ultimately
that
is
there.
And
the
reason
we
launched
our
app
is
to
actually
have
the
diagnostic
pathway
living
on
there,
so
it's
a
really
easy
tool
for
all
clinicians
to
use
in
clinic.
And
so
then
we
haven't
had
that
before.
We've
only
had
a
checklist,
and
even
that
checklist
has
improved
things
so
much.
So
we're
optimistic
that
an
official
pathway
and
bringing
in
the
spider
as
well,
that's
another
diagnostic
tool
that's
underused
at
the
moment,
but
is
incredible,
help
incredibly
helpful.
So
we're
just
going
to
be
giving
lots
more
tools,
making
it
really
easy
to
find
them,
making
them
translated,
you
know,
into
other
languages,
and
just
making
it
really
easy
for
doctors
to
find
what
they
need
to
help
these
people.
That's
incredible.

SPEAKER_02
34:55

I'm
excited
to
see
how
this
transforms
the
trajectory
of

Vascular Compressions And Future Phenotypes

SPEAKER_02
35:00

EDS
and
it's
in
understanding
it
more
in
the
future.
Like
it's
exciting
to
hear
it.
It's
it's
action
in
motion.
And
I
love
that
so
much.
Even
with
the
updated
guidelines,
many
of
us
still
find
the
diagnosis
doesn't
open
doors
and
sometimes
it
closes
them.
And
for
me,
I
can
attest
to
this
in
the
sense
that
I
honestly
didn't
want
my
diagnosis
in
my
chart
for
a
long
time.
And
the
reason
for
that
was
is
that
when
a
practitioner,
whether
it
was
a
specialist
or
even
a
family
care
doctor,
saw
that
I
was
hypermobile
or
had
EDS,
they
wouldn't
see
me
as
a
patient,
even
if
it
was
unrelated.
But
they
were
so
scared
of
treating
someone
with
hypermobility.
And
it's
a
little
frustrating
because
I'm
like,
I
just
want
basic
help
with
something.
Why
do
you
think
providers
hesitate
to
treat
patients
once
EDS
appears
in
the
chart?
And
how
can
we
change
that?

SPEAKER_00
35:54

Because
they're
overwhelmed,
because
it's
such
a
multi-systemic
condition
that
it's
overwhelming.
Like
I
said
before,
it's
head
to
toe.
And
so
that
in
front
of
a
clinician
is
is
overwhelming
with
them
working
within
a
framework
that
doesn't
support
chronic
health.
They
have
budgets,
they
have
time
frames
that
they
have
to
get
things
done
by,
and
that
doesn't
work
with
chronic
health.
That's
why
I
said
the
biggest
issue
we
face
is
our
healthcare
systems
are
not
set
up
for
the
chronic,
they're
set
up
for
the
acute.
And
that
really
is
the
underlying
issue
here
with
everything.
So,
you
know,
once
we've
got
the
new
criteria,
we're
going
to
attempt
to
tackle
some
of
these
problems,
knowing
that
they
are
so
much
bigger
than
us.
And
so
there's
only
so
much
we
can
do,
and
we
represent
a
global
audience.
So
we're
not
just
talking
about
one
country,
and
every
country
and
jurisdiction
has
different
insurances
and
you
know,
healthcare
systems.
And
so
it's
a
it's
a
real
challenge.
But
I
think
ultimately
we
need
to
dispel
the
fear
that
is
there
for
clinicians
about
these
people
and
say
you
can
actually
make
a
difference
to
this
person's
quality
of
life
by

Putting Guidance Into Practice And Tools

SPEAKER_00
36:58

pointing
them
here,
sending
them
to
our
website,
you
know,
because
we've
put
the
effort
into
collating
all
of
these
resources
that
actually
help
people.
Um,
and
we're
looking
to
build
more
and
more
of
those.
You
know,
ultimately
people
can
access
a
better
quality
of
life
through
finding
things
and
through
those
networks,
not
necessarily
relying
on
a
doctor
to
tell
them
everything.
But
I
think
that
bridging
and
that,
you
know,
signposting
is
so
important,
not
just
to
us,
but
from
us
as
well.

SPEAKER_02
37:25

Yeah.
For
those
that
feel
that
pressure
to
hide
the
diagnosis
just
to
receive
care,
how
do
you
balance
safety
with
transparency?
I
think,
you
know,
I
think
this
will
shift
and
change,
but
I
do
think
there
is
still
that
stigma
until
that
point.
How
do
we
do
that
with
safety?
Because
people
with
HEDS
have
to
be
treated
slightly
different
with
certain
care.
So
we
have
to
be
safe
in
our
care
at
the
same
time.

SPEAKER_00
37:53

Well,
I
mean,
listen,
I
would
always
push
for
transparency
because
of
that
very
reason.
But
ultimately,
if
that
is
really
preventing
care,
then
there's
a
problem.
We
are
doing
our
best
to
understand
why
that
is.
We're
hoping
to
do
a
really
large-scale
survey
to
healthcare
professionals
outside
of
our
world
to
try
and
understand
why
it
is
that
there
is
that
reaction
to
try
and
prevent
people
from
thinking
that
they
do
have
to
hide
it.
I
wish
I
had
a
magic
answer
for
you,
but
I
don't.
We're
we're
ultimately
spinning
in
a
world
that
doesn't
serve
us
right
now.
And
that
is
the
reality.

SPEAKER_02
38:28

Yeah.
It
is,
it's
um,
it's
an
interesting
thing
to
want
a
diagnosis
to
know
how
to
advocate
for
yourself
and
have
people
who
understand
the
disease,
but
because
of
the
healthcare
system

Stigma After Diagnosis And Access To Care

SPEAKER_02
38:42

they
work
in
as
providers
are
not
allowed
to
treat
people
with
these
conditions.
And
it's
it's
incredibly
frustrating.
You
know,
I've
experienced
this.
Several
people
that
I
talk
to
experience
this,
but
I
do
think,
you
know,
for
many
of
us,
being
transparent
is
going
to
ultimately
be
safer.
You
know,
it
just
there's
so
many
challenges
when
it
comes
to,
for
instance,
those
of
us
with
endometriosis,
we
talked
about
surgery.
Surgery
is
one
of
those
things
that
many
of
us
with
endometriosis
have.
And
it's
not
optional
for
some
people
just
to
be
able
to
live.
But
when
EDS
is
part
of
the
picture,
it
changes
that
conversation.
Given
how
common
surgery
is
for
endometriosis,
what
are
the
considerations
that
people
should
make
when
they
have
EDS?

SPEAKER_00
39:29

I
think
that's
really
difficult
because
prior
to
my
EDS
diagnosis,
I
had
so
many
surgeries,
mainly
abdominal
related
to
my
polycyticobis
and
endometriosis.
And
I've
almost
had
none
since
because
I
know
that
surgery
is
not
the
friend
of
EDS.
Right.
Now,
there
are
some
exceptions
to
that,
one
being
things
like
endometriosis,
where
you
do
need
to
have
some
adhesions
removed
sometimes,
and
that's
just
reality.
And
the
other
being
bony
surgery.
So
I've
had
both
my
wrist
fuse
in
it.
An
incredibly
successful
surgery.
I've
had
you
know
tissues
repaired
and
they've
torn
again
five
minutes
later.
So
I
think
anything
tissue
related
should
should
you
know
where
possible
be
avoided.
But
there's
again
there's
the
ideal
and
there's
then
there's
the
reality
of
it.
Um
if
you
need
surgery,
you
need
surgery.
And
I
think,
you
know,
again,
there's
resources
on
our
website
that
you
can
give
to
surgeons
to
for
what
they
can
think
about
from
everything
from
jaw
dislocations
when
interbating
to
stitching,
suturing,
you
know,
anesthetic,
local
anesthetic
not
working,
general
anesthetic
causing
more
nausea
and
side
effects.
And
there
are
those
considerations
to
make,
but
there's
you
know,
it's
not
like
you
can't
have
surgery,
and
there's
people
with
beds
that
have
to
have
life-saving
surgery,
it's
just
kind
of
do
it
in
the
best
environment
that
you
can.
And
again,
that
comes
with
transparency
and
feeling
like
you
can
tell
your
surgeon
those
things.
So
again,
I've
always
been
very,
very
lucky
that
I've
had
EDS
aware,
or
even
when
they're
not
just
willing
to
listen.
And
I
think
that's
largely
again,
I've
been
lucky
on
some
occasions,

Surgery Considerations For EDS And Endo

SPEAKER_00
41:08

and
some
of
them
has
have
been
because
it's
private
health,
you
know,
and
they
listen
more,
more.
I
don't
know
why,
but
they
listen
more
when
it's
private.

SPEAKER_02
41:16

Interesting.
See,
and
our
system
is
so
different
than
that
because
we
don't
have
as
much
of
the
that
structure.
We
have
the
insurance
structure.
So
it's
whether
it's
covered
by
insurance
or
whether
it's
not
covered
by
insurance.
And
we're
finding
more
specialists
can't
survive
in
the
insurance
model.
And
so
they
go
private
pay.
And
so
it
ends
up
being
a
very
costly
endeavor.
But
even
at
that,
I
think
that
there's
a
lot
of
times
that
from
my
experience,
I
can
tell
you,
like,
even
having
a
lot
of
the
knowledge
I
have,
they
kind
of
look
at
you
cross-eyed
sometimes
if
they
aren't
as
familiar
with
what
you
are
talking
about,
whether
it's
endometriosis
or
EDS
or
whatever.
If
they
don't
have
a
deep
familiarity
with
it,
they
will
often
be
more
dismissive,
in
my
experience.
And
that's
not
to
say
that's
true
for
everyone.
I
I
just,
you
know,
it's
been
an
interesting
dynamic
when
I
walk
into
the
room
with
good
knowledge
and
they're
like,
especially
for
endometriosis
being
one
that's
very
misunderstood
and
has
various
definitions
depending
on
who
you
talk
to
about
it.
So
it
is
a
little
bit
more
challenging
to
to
talk
about
that
um
with
certain
providers.
But
in
that
context,
what
should
informed
consent
look
like
when
complexity
exists?
Because
when
we're
talking
about
these
surgeries
and
we're
talking
about
care,
true
informed
consent
um
is
is
challenging
to
get
in
and
of
itself.
But
when
complexity
is
there,
what
should
we
look
for?

SPEAKER_00
42:43

I
mean,
it's
so
difficult
because
again,
it's
it's
what
what
should
you
look
for
and
and
what
do
we
uh
unfortunately
settle
for?
Because
what
do
you
do
if
you
don't
get
that?
You
know,
so
I
think
I
think
ultimately
for
me,
one
tool
that
I
wish
healthcare
professionals
were
experts
at
in
in
consent,
in
listening,
in
caring
for
is
listening.
It
costs
nothing,
everyone
can
provide
it,
and
the
amount
that
that
is
lacking
is
astonishing.
And
that's
where
lack
of
validation
comes
from.
That
feeling
of
informed
consent,
that
feeling
of
patient-centered
care,
you
know,
it's
because
doctors
aren't
listening,
truly
hearing
the
experiences
of
the
person
in
front
of
them,
seeing
them
as
a
patient,
and
the
term
patient
is
such
a
paternalistic
term
and
notion,
and
this
person
in
front
of
you
is
under
you.
And
I
think
that
it's
you
know,
that's
why
I
very
rarely
use
the
term
patient,
and
I
always
use
lived
experience
wherever
I
can,
because
it
needs
to
be
an
equal
dialogue.
And
I
just
think
that
if
doctors
started
from
a
point
of
listening
instead
of
telling,
everything
would
be
better.

SPEAKER_02
43:56

Yeah,
if
they
come
in
barging
in
the
door,
telling
you,
doing
more
talking
than
you
are,
there's
probably
a
problem
there.
That's
from

Informed Consent Starts With Listening

SPEAKER_02
44:06

experience
on
that
end.
When
someone's
managing
endometriosis,
EDS,
POTS,
MCAS,
what
treatment
and
care
considerations
are
most
often
missed?

SPEAKER_00
44:16

I
think
the
multisystemic
nature
of
it,
so
the
fact
that
all
these
things
can
coincide
at
once,
you
know,
you
can
go
to
a
doctor
and
be
like,
I've
got
a
disiccating,
painful
knee,
and
I'm
really
tired
and
my
heart's
racing,
and
they're
like,
Okay,
well,
they're
three
very
different
things
and
they're
not
connected.
And
I
think
that's
why
diagnostic
odysseys
are
as
long
as
they
are.
So
I
think
that
that's
the
biggest
problem.
And
I
think
that
also
when
you
tend
to
have
one
issue,
everything
is
then
blamed
on
that
issue.
So
if
you
have
EDS,
then
they
wouldn't
think
about
endometriosis
because
they'd
just
be
like,
oh,
it's
your
EDS,
and
vice
versa.
So
that's
also
something
to
think
of.
And
these
and
the
other
things
that
are
totally
unrelated
to
your
health
condition
need
to
be
considered
as
well.
So
it's
I
think
there's
lots
of
reasons
for
it.
But
again,
it
goes
back
to
that
chronic
health
piece
that
doctors
and
and
everyone
are
looking
for
those
acute
issues.
Are
you
gonna
die?
If
not,
you're
someone
else's
problem.
And
people
just
keep
being
pushed
and
pushed
to
the
next
person,
and
no
one
is
actually
solving
their
problem.

SPEAKER_02
45:17

No.
I
would
much
rather
a
provider
say,
I
don't
have
all
the
answers
to
this,
but
let
me
look
around
and
see
who
might.
And
I
think
there's
that,
I've
said
this
before,
but
there's
that
lack
of
curiosity
sometimes
because
of
the
time
constraint,
because
of
the
budgetary
restraints
for
providers,
that
sometimes
we
miss
those
small,
simple
words
and
that
push
for
better
care.
That's
something
that,
you
know,
I
think
a
lot
of
specialties
often
will
they
do
get
right
because
within
their
specialty,
they're
looking
at
all
the
the
different
pieces
of
the
puzzle.
Um,
but
they
can't
work
in
silos
either.
When
you're
working
with
a
multi-systemic
disorder
or
disease,
you
have
to
be
able
to
look
outside
of
one
system.
And
I
think
that's
probably
one
of
the
biggest
challenges.
And
that's
where
that
health
privilege
comes
from,
right?

Managing Multisystem Complexity Without Silos

SPEAKER_02
46:06

We're
very
privileged
that
we
can
talk
to
different
providers,
that
we
can
seek
out
different
care,
whether
it's
a
physical
therapist
or
a,
you
know,
rheumatologist,
whatever
the
case
is.
But
if
you
don't
have
that,
that's
where
that
gets
a
little
bit
challenging
because
they
tend
to
work
more
in
those
silos
and
things
get
missed
along
the
way.
What
are
you
most
hopeful
for
moving
forward?
Are
there
new
technologies,
new
things
happening
that
are
going
to
maybe
help
these
patients
in
the
future
with
better
quality
of
life?
Are
you
hopeful
for
anything
coming
up?

SPEAKER_00
46:38

I
am
hopeful,
more
hopeful
than
I've
ever
been.
I
think
there's
a
lot
of
momentum
finally
coming
together.
We've
funded
a
lot
of
research
over
the
past
few
years
that
is
finally
building
the,
you
know,
we've
got
other
places
like
the
Norris
Lab
who
are
using
our
data
and
our
samples
to
also
do
some
really
exciting
work.
Um,
I
think
we're
closer
than
ever
to
a
biomarker
and
understanding
the
kind
of
pathophysiology
behind
these
conditions.
That
will
then
lead
to
therapeutics
and
understanding.
So
I
think
that
that's
really
promising
and
exciting.
I
think
this
diagnostic
criteria
will
give
this
condition
a
lot
of
credibility
and
access
and
reach
that
it
hasn't
before.
And
I
think
we've
got
the
connections,
the
networking,
and
the
funding
in
place
for
the
first
time
to
work
with
external
stakeholders
that
can
really
help
us
address
some
of
these
issues.
So
I
think
it's
an
exciting
year.
We're
excited
to
announce
lots
of
partnerships
and
exciting
things
that
are
coming.
I
can't
yet
talk
about,
but
um,
it's
uh
it's
gonna
be
a
big
year.
It's
our
10-year
anniversary,
so
it's
uh
really
is
exciting.
We
continue
to
recruit
into
our
Biobank,
our
Global
Biobank.
We've
got
various
opportunities
to
do
that
around
the
world
actually
this
year,
and
we're
gonna
be
announcing
information
about
that.
We've
got
our
global
learning
conference
in
uh
Dallas
in
the
USA
that's
gonna
be
celebrating
our
10-year
anniversary
with
lots
of
exciting
things.
Biobank
enrollment
event
at
that
event
as
well.
Yeah,
lots,
lots
coming
up.
I'm
exhausted
thinking
about
the
next
two
years,
but
it's
gonna
be
it's
gonna
be
good
and
I'm
hopeful.

Momentum: Biomarkers, Biobank, Partnerships

SPEAKER_02
48:10

Yeah,
it
feels
like
you're
just
dingling
a
little
carrot
in
the
front
of
us,
though.
Just
I
know.
But
it
is
exciting
because
I
feel
like
there's
actually
conversation
surrounding
this
in
a
positive
way.
I
think
that
we
can
get
stuck
in
like
the
some
of
the
negative
aspects
of
it,
but
there
is
a
lot
happening.
You've
done
an
incredible
job
at
navigating
better
ways
to
bring
hope
to
these
patients,
which
honestly,
like
as
someone
who
lives
with
this
and
is
learning
more
about
it,
the
more
we
learn
from
people
like
you,
the
better
equipped
we
are
to
just
navigate
our
health
in
general.
That
in
and
of
itself
is
a
gift.
We
should
be
hopeful
for
that.
So
I'm
excited
for
that.
But
then
everything
that
you're
doing
is
profoundly
impactful
for
those
of
us
that
are
feeling
like
we're
floundering
oftentimes
with
misinformation
and
miscommunications.
And
so
the
way
that
you
bring
that
clarity
and
the
passion
that
you
continue
to
push
forward
with
is
just
I
am
leaving
this
conversation
more
inspired
in
what
I
do
because
of
what
you've
been
able
to
do.
So
thank
you
for
for
everything
that
you
do.

SPEAKER_00
49:21

That's
very
kind
and
thank
you
for
all
you're
doing
as
well.
I
mean,
it's
it's
a
uh
it's
a
small
world,
the
advocacy
world,
and
we're
all
just
trying
to
do
our
best.
But
thank
you
very
much.
And
I
think
that
this
is
a
good
time
to
be
hopeful.

SPEAKER_02
49:34

Yeah,
I
think
so.
Well,
thank
you,
Laura,
so
much
for
taking
the
time
to
sit
down
with
me.
And
I'm
excited
to
hear
more
when
the
guidelines
come
out,
which
is
you
said
December
of
2026.

SPEAKER_00
49:46

Yeah,
this
year
now,
less
than
a
year
to
wait.

SPEAKER_02
49:48

And
I'm
excited
for
that.
Where
can
people
continue
following
your
work
and
be
on
the
lookout
for
these
guidelines?
Where
can
they
find
that
at?

SPEAKER_00
49:58

So
you
can
follow
me,
Lara.bloom
l-a-ra
on
Instagram
mainly
and
and
LinkedIn
as
well.
The
society
is
LSH-Danlos.com,
that's
where
all
of
the
updates
are
released.
LS.danlos
on
Instagram
and
Facebook
and
LinkedIn
and
all
of
that
good
stuff.
So
you
can
find
us.
We're
pretty
easy
to
find
the
Ella
Danlos
Society.
Yeah,
we're
gonna
be
we're
not
gonna
be
quiet
about
it.
So
hopefully
you
will
you
will
hear.
And
we're
gonna
be
doing
a
free
launch
event
on
the
day
that
it's
published
to
tell
everybody
what
it
means
because
sometimes
these
medical
publications
can
be
a
little
bit
uh
weighty.
So
we're
gonna
be
doing
something
that
that
reaches
everybody
and
tells
people
what
it
means.

SPEAKER_02
50:41

Yeah.
Oh,
I'm
excited
to
hear
more
about
this.
I
think
a
lot
of
us
listening
today
just
needed
to
hear
that
complexity
isn't
a
flaw.
It's
part
of
what
makes
us
human.
And
that
there
are
people
working
to
make
care
safer,
kinder,
and
more
connected.
And
that's
uh
I'm
excited
to
see

Where To Follow And What’s Next

SPEAKER_02
51:00

where
that
future
holds
for
your
for
what
you're
doing.
Thank
you
again
so
much.
Thank
you
so
much
for
joining
us.
I
hope
to
have
you
back
sometime
once
we
get
those
guidelines
and
and
to
really
break
that
down
even
more.
So
thank
you.

SPEAKER_00
51:12

Absolutely.
Thank
you
so
much.

SPEAKER_02
51:13

Yes,
until
next
time,
continue
advocating
for
you
and
for
others.