Spotting Hypermobile EDS Early In Kids And Teens: With Dr. Sarah Cohen-Solomon

Why The Flexible Kid Gets Missed

SPEAKER_01
0:00

What
if
the
flexible
kid
everyone
praises
is
actually
the
one
being
missed?
In
this
episode,
we
sit
down
with
Dr.
Sarah
Cohen
Solomon,
a
pediatric
specialist
in
hypermobile
EDS,
who's
not
just
treating
these
complex
conditions,
she's
lived
them.
From
years
of
being
dismissed
and
misdiagnosed
to
now
helping
kids
get
answers
earlier,
she's
bringing
a
perspective
most
doctors
simply
can't.
We're
diving
into
what
hypermobility
really
is
and
what
it
isn't.
The
early
signs
parents
and
providers
often
overlook,
the
surprising
connection
to
endometriosis
and
what
it
actually
takes
to
support
kids
living
with
chronic
pain.
If
you've
ever
been
told
it's
just
growing
pains
or
it's
all
in
your
head,
this
conversation
will
change
the
way
you
see
everything.
So
stick
around.
Welcome

Podcast Mission And Medical Disclaimer

SPEAKER_01
0:54

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.
After
years
of
navigating
chronic
pain,
misdiagnoses,
and
medical
gaslighting
herself,
Dr.
Cohen
Solomon
now
combines
clinical
expertise
with
lived
experience
to
deliver
truly
whole
person
care.
Her
work
is
reshaping
how
we
understand
and
treat
complex,
often
overlooked
conditions,
especially
in
kids
who
are
too
often
dismissed.
Please
help
me
in
welcoming
Dr.
Sarah
Cohen
Solomon
to
the
table.
Thank
you
so
much,
Dr.
Cohen
Solomon,
for
sitting
down
with
me
today.
This
is
such
a
fascinating
conversation
that
we're
gonna
have,
and
I
am
honored
that
you
have
sat
down
with
me
today.
Thank
you.

SPEAKER_00
2:38

Thank
you.
I'm
really
excited.
This
is
uh
an
important
topic
that
gets
overlooked
very
frequently,
so
I'm
excited
too.

SPEAKER_01
2:44

Yeah.
So
before
we
get
started,
as
per
our
usual,
what
is
your
drink
order
of
the
day?
What
is
your
comfort
drink?

SPEAKER_00
2:53

I
am
in
a
peppermint
tea
mode
these
days.
It's
just
comfy
to
drink
all
day.
I
I
just
recently
moved.
I'm
in
surround
myself
with
comfy
things
mode.

SPEAKER_01
3:03

Yeah.
And
it's
also
really
good
if
you're
nauseous
half
the
time.

SPEAKER_00
3:07

Yeah,
I
think
I
got
into
the
habit
that
way.
I'll
put
a
little
tea
in
uh
or
um,
I'll
put
a
little
honey
in
and
and
and
make
it
a
bit
of
a
treat.
But
uh
it
it
works.
It
works
with
the
comfort,
it
works
with
the
nausea
for
sure.

SPEAKER_01
3:19

Absolutely.
I
am
still
in
my
plain
old
coffee
era
where
I
just
love
coffee,
but
I
will
tell
you
that
coffee
tastes
better
when
it's
in
your
favorite
mug.
I
agree.
I
think
someone
needs
to
study
this.
There's
no
question.
There's
no
question.
Like
this
is
this
is
my
mug
of
choice,
and
if
you
can't
see
it,
it
has
what's
called
an
Indian
paintbrush,
it's
a
pottery.
Oh,
it's
beautiful.
And
so
I
am
from
Wyoming,
and
this
is
the
state
flower,
and
my
sister-in-law
got
that
for
me.
And
it
that's
my
favorite
mug,
and
it
always
tastes
better
in
there.
So
no
matter
what
I
drink,
it
always
tastes
better.
So
I'm
excited
for
this
conversation
for
a
couple
of
reasons.
And
it's
because
I
haven't
I've
talked
a
lot
about
EDS
and
I've
talked
a
lot
about
endometriosis.
I
there's
there's
obviously
a
correlation
there,
but
what
we
haven't
really
touched
on
as
much
is
just
the
adolescents
that
have
to
kind
of
navigate
this.
And
as
a
parent
with
two
young
children,
this
is
something
that
I'm
very
passionate
about
because
I
do
what
I
do
because
of
them.
So
I
think
you
were
the
perfect
person
to
bring
this
conversation
to
the
table.
Can
you
give
us
a
background
on
what
you
do
and
a
little
bit
of
your
story
so
we
have
a
good
place
to
start?

SPEAKER_00
4:33

Absolutely.
So,

Dr Solomon’s Diagnosis And Calling

SPEAKER_00
4:34

my
my
journey
was
very
fate-driven.
So
I
myself
have
hypermobile
Ellers
Danlos
syndrome.
I
was
diagnosed
when
I
was
in
college,
but
my
symptoms
started
when
I
was
around
10.
And
10
years
is
not
unusual
for
hunting
down
this
kind
of
diagnosis,
unfortunately.
But
uh,
but
pelvic
pain
and
pain
with
menstruation
was
very
much
part
of
my
early
years
as
well.
So,
if
we're
talking
about
uh
endometriosis,
that's
really
relevant
to
my
pain
journey.
So
I
grew
up
with
a
lot
of
diagnosis
and
medical
stuff
happening
all
around
me
and
really
wasn't
sure
if
medical
school
was
gonna
work
physically.
So
my
my
whole
life
involved
a
lot
of
trudging
through
the
process
of
accommodations
and
accessibility
and
things
like
that
for
very
invisible
symptoms.
So
that
became
very
much
part
of
my
personhood,
not
in
a
it's
gonna
define
me
way,
so
much
as
a,
I'm
a
person
who
sees
where
problems
still
exist
and
I'm
someone
who
is
driven
to
fix
them
when
I
encounter
those
problems.
So
I
got
to
medical
school
and
that
continued
to
be
something
that
was
very
relevant
to
my
medical
training
journey.
And
in
terms
of
becoming
an
HEDS
specialist,
that
was
kind
of
an
accident.
I
was
actually
always
planning
on
uh
at
least
involving
adolescents
in
my
practice.
I
love
teenagers.
I
love
that
transition
period.
Um,
and
my
my
intention
was
always
to
be
in
academic
medicine.
But
what
happened
was
that
my
husband
and
I
were
out
of
the
country
for
a
few
years
for
his
postdoc
and
I
couldn't
work
there
easily.
So
I
was
going
up
and
back
to
my
previous
position
where
I
became
an
Ellers
Dan
Low
specialist
or
a
hypermobile
one
specifically,
because
that
clinic
was
entirely
focused
on
hypermobile
Ellers
Danlow
syndrome
and
the
conditions,
as
I
say
online,
the
conditions
that
go
along
for
the
ride.
Absolutely.
So
yeah.
So,
and
I
wasn't
unhappy
with
that.
It
was
just
more
of
a,
oh,
this
unusual
position
will
work
with
my
unusual
situation.
And
I
know
I
can
do
it
because
I've
lived
it.
Um,
so
sort
of
the
universe
telling
me,
all
right,
you
know,
you
you
gotta
hold
on
to
this
identity
piece,
even
though,
you
know,
there's
always
that
debate
when
you're
growing
up
with
a
chronic
illness.
Do
I
want
this
to
be
my
identity
or
do
I
want
to
do
other
things?
But
that's
how
I
landed
here.
And
now
I'm
I'm
headed
back
to
the
world
of
academics
so
that
I
can
also
teach
this
to
other
people
so
that
it's
not
just
a
small
group
forever
and
ever
able
to
diagnose
and
properly
manage
these
conditions.
Cause
that
I
think
is
the
thing
that's
most
important
to
me
at
this
point
for
sure.

SPEAKER_01
6:57

Absolutely.
One
of
the
things
that
I've
talked
about
before
is
that
I
was
actually
going
into
school
to
be
pre-med,
and
I
realized
a
lot
of
my
health
issues
kind
of
prevented
me
from
doing
it
fully.
And
so
I
switched
from
that
to
communications,
which
oddly
enough,
I'm
now
kind
of
commanding.
Yeah,
you're
kind
of
both.
Yeah.
Which
is
why
I
love
what
I
do.
The
challenge
in
that,
and
something
that
you
spoke
about,
is
just
the
challenge
of
knowing
if
you
can
accomplish
your
dreams
based
off
of,
you
know,
how
your
body
may
be
functioning
at
that
time.
And
that's
something
that's
so
real
for
so
many
people
with
both
EDS
and
endometriosis.
And
that's,
you
know,
for
those
people
who
maybe
are
not
familiar
with
hypermobile
EDS,
can
you
just
give
us
a
quick
synopsis
of
what
it
is
and
maybe
some
of
the
misconceptions
surrounding
it?

SPEAKER_00
7:49

Absolutely.

What Hypermobile EDS Really Means

SPEAKER_00
7:50

So,
first
of
all,
I
want
to
be
very
clear
that
Ellers
Danlow
syndrome
actually
refers
to
a
collection
of
conditions.
Um,
depending
who
you
ask,
it's
either
13
or
14
discrete
types
of
connective
tissue
disorders.
13
of
those
have
a
gene
that
we
can
actually
test
on
genetic
testing,
you
know,
a
little
cheek
swab.
Um,
and
they
cause
connective
tissue
disorders
that
have
various
symptoms
that
are
identifiable
and
have
clinical
criteria
to
do
the
diagnosis
with
that
gene
test.
The
hypermobile
uh
type
of
Ellers
Downlow
syndrome
makes
up
maybe
80
to
90%
of
the
total
people
with
a
type
of
EDS,
but
it's
the
only
type
that
does
not
have
a
gene
that
we
have
100%
with
certainty
identified
that
we
can
do
a
test
on.
So
it
relies
the
diagnosis,
it
relies
on
a
really
good
history
and
exam
and
listening
to
your
patient.
But
what
it
does
is
that
your
connective
tissue,
which
is
the
glue
that
holds
you
together,
uh
isn't
formed
properly,
or
maybe
it's
broken
down
improperly.
We're
still
figuring
out
the
details
of
the
pathology.
But
what
it
means
for
us
practically
is
that
our
joints
are
both
hypermobile,
which
means
they
go
too
far,
uh,
as
well
as
uh
unstable,
which
means
they
are
easily
injured
or
dislocated
with
what,
you
know,
the
kind
of
injuries
you
wouldn't
expect.
I
have
dislocated
my
shoulder
by
sneezing,
for
example.
That's
not
normal,
um,
obviously.
But
the
more
and
more
we
learn
about,
especially
the
hypermobile
type,
and
I
want
to
be
clear
that
that
while
I
do
see
other
types,
I
do
see
majority
hypermobile.
So
if
I
say
EDS,
I
usually
mean
that,
but
I
really
shouldn't.
It's
a
bad
habit.
It
should
be
individualized
by
type.
But
the
more
we
learn
about
the
condition
and
all
of
them,
is
the
more
we
see
that
it
is
so
systemic
that
we
had
no
idea.
When
I
was
diagnosed,
it
was
considered
joints
only.
And
now
we
know
that
it
affects
the
gut,
it
affects
the
nervous
system,
it
affects
the
pelvic
organs.
Um,
you
know,
and
so
it's
really
important
to
understand
the
systemic
nature
of
this
connective
tissue
problem
so
that
we
can
properly
not
just
understand
it,
but
reach
better
management
planning.
Because
if
we
just
assume
it's
it's
one
system
and
one
system
only,
we
are
really
limiting
ourselves.

SPEAKER_01
9:55

Yeah.

Management Over A Magic Cure

SPEAKER_01
9:56

I
think
one
of
the
questions
I
get
often
is
is
there
a
treatment
for
hypermobile
EDS?

SPEAKER_00
10:01

That's
a
great
question.
So
I
prefer
to
use
the
word
management
approach.
Um,
treatment
implies
that
I've
got
a
magic
pill
or
a
wand
or
something
that
is
going
to
fix
the
problem.
And
unfortunately,
right
now,
the
gene
editing
technology
that
exists
is
not
ready
for
human
use
on
this
condition.
Maybe
someday
I
think
it's
possible.
The
more
we
learn,
the
closer
we
get.
But
in
in
this
day
and
age,
management
is
where
it's
at.
So
I
can't
fix
the
underlying
problem,
but
I
can
make
it
significantly
better
both
by
early
recognition,
wink
wink
to
our
pediatricians
out
there,
right.
And
uh
and
really
understanding
how
it
works.
So
physical
therapy
is
very,
very
important,
but
it's
important
when
it's
done
correctly.
So
we
don't
want
somebody
who
assumes
that
we're
one
isolated
joint
injury
that
you
push
through.
That's
really
dangerous
to
someone
whose
entire
body
is
involved.
Because
usually
there's
like
a
pattern
of
injury.
It's
not
just,
oh,
I've
hurt
my
shoulder.
My
shoulder
hurts
because
I've
been
walking
funny,
because
three
years
ago
I
sprained
an
ankle
that
never
healed
properly.
So
I've
been
hiking
up
that
backpack
so
I
can
walk
off
the
ankle.
Like
that's
that
is
normal
for
us.
So
insurance
makes
it
all
about
the
shoulder,
and
that
means
we
don't
get
appropriate
care.
So
when
we
look
at
it
as
a
systemic
issue,
we
get
better
physical
therapy,
we
get
better
outcomes.
And
it's
important
to
be
with
someone
willing
to
not
just
learn
about
that,
but
but
take
it
seriously.
So
physical
therapy,
100%
valuable.
There
are
other
techniques
as
well,
like
uh
Jeannie
DuBon
has
a
phenomenal
app
and
membership
program
um
called
the
Zebra
Club.
She's
a,
I
believe,
Pilates
uh
trained
instructor
out
of
the
UK
who
works
very
closely
with
the
Eller
Stanless
Society.
And
uh
programs
like
hers
very
much
focus
on
getting
in
touch
with
your
body
again
so
that
the
years
and
years
of
pain
and
and
genuine
fear
that
your
body
is
going
to
malfunction
on
you,
which
is
a
real
phenomenon,
you
can
kind
of
start
unlearning
that
because
that's
an
added
layer
that
makes
it
hard
or
near
impossible
to
do
the
work.
Because
we
need,
it's
not
just,
ooh,
I
got
to
exercise.
It's
I
have
to
move
my
body
in
a
way
that
is
safe,
but
I
also
have
to
believe
that
it's
safe.
So
it's
it's
it's
a
whole
thing.
If
I
had
12
hours,
I
wouldn't
be
done
explaining
it.
But
Genie's
program,
the
Zebra
Club,
is
great.
There
are
other
techniques
out
there
that
I'm
happy
to
go
into
in
great
detail,
but
slow
start,
gentle
movements,
incorporating
it
into
your
day
is
where
I
always
start
and
body
awareness.
Um,
because
by
the
way,
proprioception,
meaning
my
awareness
of
where
my
body
is
in
space,
is
really
poor
in
people
with
L
Standard
syndrome.
Um,
all
types,
but
specifically
the
hypermobile
type.
Like
I
walk
into
doors
all
the
time.
I
will
wake
up
with
a
bruise
that
I
don't
know
where
it
came
from,
and
that
has
implications.
So
it's
really
important
to
train
your
body
to
know
where
it
is.

SPEAKER_01
12:39

Absolutely.
I
mean,
I
that's
something
that
I've
really,
really
struggled
with
is
just
that
spatial
awareness
of
knowing
where
I
am
in
space.
And
I
work
with
my
trainer
a
lot
with
this.
And
I
think
that's
one
of
the
things
that
has
been
really
impactful
for
me
is
finding
a
trainer
who
does
functional
movement.
What
does
functional
movement
mean?
It
means
various
things,
but
what
it
means
is
someone
who's
not
going
to
shove
you
into
doing
burpees
that
you
cannot
do.
Yes.
It
means
allowing
your
body
to
function
at
its
optimal
without
hurting
it.
Yes.
And
that's
something
that
we've
had
to
work
on.
It
could
be
like
a
light
little
touch
for
me
that
just
helps
me
know
my
space
better.
It
doesn't
necessarily
mean
that
I
can't
do
things.
I
just
have
to
modify
a
little
bit.

SPEAKER_00
13:22

Exactly.
And
I
love
exactly
the
way
you
said
that.
So
because
I
am
seeing
young
people
who
are
growing
into
themselves
and
figuring
out
who
they
are,
the
last
thing
I
want
to
do,
and
I
never
I
never
feel
like
I
even
do
this
perfectly,
but
my
goal
is
always
to
make
sure
that
they
know
that
I'm
not
saying,
oh
God,
you
can't
do
anything,
you
know,
protect
your
body
at
all
costs.
I'm
saying
we
might
need
to
modify
what
you
do.
What
I
want
to
do
is
figure
out
a
way
that
you
can
do
the
things
that
are
meaningful
and
that
you
love.
You
know,
is
that
necessarily
the
best
thing
directly
for
your
joints?
Well,
if
you
love
track
and
field
and
you're
slamming
on
your
joints
all
day,
I'm
going
to
have
to
tell
you
that
that
might
cause
harm.
But
at
the
same
time,
not
every
single
person
with
hypermobile
LHD
and
lose
and
and
hypermobile
spectrum
disorder,
by
the
way,
as
well,
tagged
onto
that,
is
different.
It's
it's
different.
My
twin
sister
and
I
have
the
same
list
of
diagnoses.
And
at
no
point
in
our
lives
have
we
looked
identical
or
been
able
to
function
identically
at
all.
So
I
never
want
to
tell
a
patient,
you
cannot
do
that,
you
can
never
do
that.
I
want
to
say,
at
this
time,
that
might
be
dangerous.
Let's
see
what
we
can
do
to
make
it
more
feasible.
And
sometimes
I
need
hard
conversations
where,
you
know,
something
is
like
when
the
neck
is
involved,
for
example,
there
might
be
a
hard
stop.
But
the
goal
is
always
let's
get
you
as
functional
as
possible.
It
might
be
slower
than
it
would
be,
you
know,
looking
at
your
friends
at
school,
but
I
want
to
do
as
much
as
we
can
to
make
you
as
okay
as
you
can.
And
I
want
to
put
a
little
plug
here
that
that
does
not
mean
that
you
can't
or
shouldn't
be
using
something
for
mobility.
So
if
you're
someone
who
is
also
in
pain
all
day,
having
an
easier
time
moving
might
mean
that
you
need
a
scooter
or
a
wheelchair
or
a
rollator
or
something
like
that.
And
that
is
still
better
than
the
pain
of
pushing
through
inappropriately
and
then
causing
harm.
So
I'm
I'm
I'm
full
team
accessibility
mobility
aid
and
not
limiting
how
we
think
of
movement
and
exercise.
That
is
only
a
limitation
and
we
shouldn't,
we
shouldn't.

SPEAKER_01
15:12

There's
so
much
there
because
I
mean,
first
of
all,
you
and
a
twin,
that
should
be
a
case
study
in
and
of
itself,
right?
Like
well,
so
actually
we've
been
in
studies.

SPEAKER_02
15:20

Have
you?
It's
like
a
I'm
like,
this
is
fascinating.

SPEAKER_00
15:23

So
the
so
the
the
Milner
study
that
came
out
in
2016
about
mast
cell
activation
syndrome,
um,
where
they
found
the
first
uh
triplication
uh
gene
called
hereditary
alpha
tryptisemia.
Um
we
were
both
in
that
study.
She
has
the
uh
the
duplication,
she
has
that
that
that
gene
problem.
I
do
not.
Her
mast
cell
symptoms
have
always
been
more
severe
than
mine.
We're
fraternal,
by
the
way,
for
the
record,
so
that
makes
more
sense.
But
uh,
but
yeah,
no,
you're
right.
Having
having
a
twin
with
all
the
things
has
been
scientifically
interesting,
but
also
really
valuable
for
the
support
of
it.
I
I
never
had
that
that
pit
of
despair
that
comes
with
feeling
like
you
are
alone
as
a
teenager
in
a
battle
against
your
body.
I
had
a
buddy
automatically.
Yeah.
And
that's
not
100%
positive,
but
it
was
definitely
a
weird
silver
lining.

SPEAKER_01
16:09

So
you're
not
doing
it
alone,
so
you
don't
feel
like
you're
an
outsider
looking
in
type
of
thing.
Like
great.
We
both
have
it.
Yeah.
I
didn't
even
know
hypermobility
was
a
thing.
Like,
I
mean,
we
talk
about
this
all
the
time
in
the
hypermobile
space,
where
it's
like
it
seems
like
a
really
good
party
trick,
and
it's
just
really
not
a
great
party
trick.
Right.
When
you
get
older,
you
get
in
your
40s
and
you're
like,
yeah,
but
I'm
not
sure
I
want
to.

SPEAKER_00
16:33

The
more
the
more
you
do
the
party
trick,
the
more
lax
that
area
can
become.
So
it's
easier
and
easier
to
injure.
Uh,
and
does
that
cause
a
problem
in
everyone?
No,
not
necessarily.
But
people
will
come
into
my
office
and
and
since
very,
very
often
they've
been
dismissed
or
or
not
believed
by
other
physicians,
they'll
come
in
and
be
really
eager
to
to
show
me
and
tell
me
and
convince
me
that
this
is
an
issue.
And
so
they'll
come
in
doing
all
sorts
of,
as
you
call
it,
party
tricks,
and
I
will
not
be
demonstrating
for
that
reason,
but
you
know,
coming
in
being
like,
look
what
I
can
do.
I
swear
it's
real.
And
I'm
like,
I
promise
I
believe
you,
but
put
your
joints
back
in
and
we'll
we'll
go
one
by
one.

SPEAKER_01
17:10

It's
yes,
that
that
is
a
real
thing
that
I
think.

SPEAKER_00
17:14

I
do
not
want
anyone
leaving
more
injured
than
they
came
in.

unknown
17:18

Yeah.

SPEAKER_01
17:19

Please.
Please
just
don't
show
me.
You
can
tell
me.
Yeah,
I
b
I
will
believe
you.
Yeah.
Yeah,
exactly.

Manual Therapy And Neck Adjustment Risk

SPEAKER_01
17:27

With
people
with
hypermobility,
should
we
use
caution,
especially
because
I
remember
back
when
I
was
growing
up,
I
was
using
um
a
chiropractor
to
feel
better
because
I
thought
everything
was
popping
out
of
joint.
I
was
going
to
massages
all
the
time.
Is
there
a
warning
that
we
should
adhere
to
when
these
modalities
come
into
play?
I
am
so
glad
you
asked.

SPEAKER_00
17:47

So,
so
the
major
thing,
the
really
the
only
thing
that
I
put
a
complete
please
don't
ever
do
this,
is
a
rapid
high
velocity
neck
adjustment.
And
generally
speaking,
that
is
a
technique
that
more
chiropractors
use
rather
than
physicians
or
physical
therapists,
but
certainly
anybody
who
does
manual
therapy
techniques
might
do
this.
So,
what
that
means
is
a
rapid
cracking
of
the
cervical
spine
of
the
neck
here.
And
because
there
are
very
important
blood
vessels
that
are
adjacent
to
those
joints
that
are
being
manipulated,
if
it's
done
too
quickly
or
without
appropriate
caution
and
care,
it
can
genuinely
cause
a
rupture
in
the
vessel,
which
is
obviously
very,
very
dangerous
and
potentially
deadly.
So
we
do
not
want
that.
I
have
had
patient
family
members
for
whom
that
has
happened
too.
So
this
is
a
real
problem.
So
that's
the
only
thing
that
I
say
absolutely
never,
ever,
ever,
ever
do.
Now,
to
answer
your
question
more
broadly,
manual
techniques
are
extremely
and
by
that
I
mean
techniques
that
can
allow
a
joint
that's
gotten
either
jammed
or
partially
dislocated
or
fully
dislocated
to
get
back
into
alignment.
And
by
the
way,
it's
actually
sometimes
really
hard
to
tell
what's
partially
dislocated
versus
more
of
a
muscle
spasm
that
is
making
things
feel
stuck.
And
at
the
end
of
the
day,
the
techniques
who
you
go
to
to
get
it
fixed
are
gonna
be
pretty
similar,
but
it's
just
useful
to
know
that,
you
know,
there
are
there
are
injuries
that
can
feel
like
that,
but
technically
aren't
it's
a
words,
it's
words
that
people
use
a
lot
to
describe
what
they're
experiencing.
So
um
chiropractors,
physical
therapists,
um
osteopathic
physicians,
so
a
DO
rather
than
an
MD,
they've
had
the
same
training
as
me,
um,
in
addition
to
uh
the
hands-on
techniques
to
work
with
this
alignment
and
help
the
body
function
better,
move
better.
That
can
be
extremely
important
so
long
as
they
are
aware
of
the
increased
possibility
of
injury
and
risk
to
the
vessels
specifically.
Now,
the
World
Health
Organization
has
a
warning
saying
people
with
EDS
in
general,
hypermobile
EDS
specifically,
should
not
go
see
a
chiropractor,
but
it's
really
for
the
reason
of
that
vascular
risk
in
the
neck.

SPEAKER_01
19:45

Okay.

SPEAKER_00
19:46

So
what
I
say
is
a
little
bit
more
nuanced.
I'm
very
shades
of
gray.
What
I
say
is
what
you
want
is
someone
who
understands
your
body.
You
want
someone
who
is
willing
to
listen
to
you,
understands
how
the
instability
of
this
condition
works
and
what
risks
that
involves,
and
then
who
is
willing
to
listen,
learn,
and
adapt
adapt
accordingly.
So
if
you
live
in
a
community
that
has
exactly
one
chiropractor
and
no
other
physician
or
PT
for
a
hundred
miles,
then
what
we
want
is
to
work
very
closely
with
the
chiropractor
to
carefully
explain
what
is
safe
and
what
is
not
safe
so
that
you
are
getting
some
care,
getting
better
than
nothing
can.
Depends
on
the
person,
obviously,
but
I
never
want
someone
to
say
they
can
only
see
one
type
of
person
because
that
limits
who's
available.
And
if
I'm
being
totally
honest,
a
lot
of
the
time
the
people
who
sit
in
my
heart
and
my
memory
as
care
team
members
who
made
the
most
difference
for
me,
they
did
not
come
into
that
relationship
knowing
anything
about
hypermobile
LA
Stanlow
syndrome
or
dysautonomia
or
any
of
those
things.
They
came
in
curious
and
humble
and
willing
to
go
home
and
say,
I
do
not
know
anything
about
these
conditions.
I'm
gonna
go
learn
about
them.
That
creates
a
safe
bubble
where
you
can
create
a
relationship
and
be
safe
and
get
care
and
get
healthier,
even
though
someone
didn't
come
in
with
that
originally.
So
I
never
want
to
limit
that
opportunity.
Right.
Yeah.

SPEAKER_01
21:05

That's
like
something
that
I
was
always
fearful
of
after
I
learned
that
I
was
hypermobile.
I
was
like,
you
know,
that's
one
thing
I
have
to
be
so
cautious
of.
I
but
there
were
also
moments
where
I
needed
extra
support
that
they
could
offer.
And
I
think
limiting
our
support
system
can
in
some
ways
hinder
healing
and
relief.

SPEAKER_00
21:25

Yeah,
I
agree.
I
I
think
that
one
of
the
most
important
things
becomes
relearning
how
to
trust
your
body
to
move
and
function.
And
again,
that
still
might
include
accessibility,
mobility
aids,
et
cetera.
But
if
we
walk
through
life
afraid
of
everything,
your
body
will
incorporate
that.
And
so,
by
the
way,
that's
that's
sensible,
that's
logical.
If
a
if
a
joint
falls
out
with
no,
you
know,
nothing
to
cause
it,
it
just
does
that.
Like
that
is
genuinely
terrifying.
And
so
it
just
takes
so
much
effort
to
to
feel
comf
comfortable
and
confident
again
in
a
body
that
is
inherently
unreliable.
But
that's
really
the
key
to
a
good.
Life.
It
doesn't
mean
it
erases
everything.
It
doesn't
mean
we
ignore
the
problem.
It
means
we
incorporate
it
into
how
we
live
and
how
we
adapt
and
how
we
look
forward
so
that
life
can
be
okay.
And
it's
different
for
everyone.
It
just
has
to
be.

SPEAKER_01
22:12

Yeah,
absolutely.
I
mean,
everyone
is
so
different.
And
that's
why
our
bodies
are
just
so
uniquely
made
to
each
of
us,
right?
I
love
that.
They're
so
uniquely
made.
And
no,
there's
no
one
size
fits
all
for
anyone,
right?

SPEAKER_00
22:27

But
that's
often
how
we're
trained
in
in
medicine
and
in
most
things.
And
that's
not
inherently
bad,
but
it
is
limiting
if
you're
looking
at
a
condition
like
ours.
So
it's
it's
important
that
that's
part
of
that's
why
I'm
going
back
into
academic
medicine
because
it's
so
important
to
make
sure
that
the
culture
of
all
or
nothing
black
and
white
thinking,
you
know,
multiple
choice
test
taking,
that
is
not
what
presents
to
you
in
the
office
ever.

SPEAKER_01
22:51

Yeah.

SPEAKER_00
22:52

Ever.
Yeah.

SPEAKER_01
22:53

And
speaking
of
office,
you
work
with
adolescents,
yes,
pediatrics.
Love
it.
And
which
is
so
cool.
Like
I
don't
often
get
to
talk
to
someone
that's
working
in
pediatrics,
but
I
think
I
need
to
more
because
I
it's
to
recognize
signs
and
symptoms
and
ways
that
we
can
support
our
our
kids
earlier,
I
think
is
gonna
change
the
difference
in
the
narrative
long
term
for
these
people
growing
up.

Early Signs Parents Should Not Ignore

SPEAKER_01
23:18

And
so
with
hypermobility
and
EDS,
what
are
some
early
signs
in
children
that
parents
or
pediatricians
might
miss?

SPEAKER_00
23:28

That
is
such
a
good
question.
So
one
of
my
long-term
goals
is
actually
to
create
some
guidelines
on
this
specifically
and
early
recognition
of
becoming
part
of,
for
example,
the
wellness
exam
for
kids
as
they
grow
up.
That's
that's
just
a
long-term
dream.
But
for
now,
first
and
foremost,
if
a
parent
comes
in
worried,
you
believe
the
parent.
Let's
just
start
there
for
a
second.
You
don't
come
in
and
say,
I
gotta
calm
down
this
parent.
You
go
in
and
you
say,
This
parent
is
worried.
Let
me
figure
out
why.
Let
me
figure
out
how
worried
I
should
be
based
on
how
worried
the
parent
is.
That's
where
you
start
100%
of
the
time.
Now,
once
you've
once
you've
done
that,
one
of
the
earliest
signs
that
I
hear
about
is
not
always
necessarily
what
actually
comes
into
the
office.
It's
more
of
a,
let
me
look
back
at
it.
It's
that
they
don't
seem
to
be
keeping
up
with
their
peers
in
playtime
and
activities
and
things
like
that.
So
that
early
sense
of
fatigue,
the
my
kid
needs
to
rest
more
after
activities,
my
kid
has
growing
pains
is
a
phrase
that
I
feel
triggered
by.
And
I
don't
mean
that
flippantly,
frankly.
Right.
But
the
phrase
is
overused.
When
kids
come
in
with
pain
that
is
lasting
more
than
three
months
and
it
is
disrupting
quality
of
life
or
activities,
that
is
a
problem
and
you
need
to
investigate.
So
pain
should
always
be
evaluated.
It
should
always
be
evaluated.
Fatigue
on
top
of
the
pain
should
be
evaluated.
And
hypermobile
EDS
and
HSD
are
not
the
only
things
that
could
be
happening
there
as
well,
by
the
way.
So
we
do
have
appropriate
workup
guidelines
for
when
someone
comes
in
with
what
might
be
considered
growing
pains
and
needs
to
be
ruled
out
for
other
things.
God
forbid,
you
know,
the
one
could
have
in
the
leg
bones.
That
is
one
of
the
top
things
we
worry
about
when
we
hear
about
growing
pains
for
a
kid.
So
is
this
a
significant
finding.
Don't
get
all
scared
if
you're
listening
to
this
at
home.
It's
not
usually
that.
I'm
just
thinking
as
a
pediatrician
who
needs
to
make
sure
I
don't
miss
scary
things.
So
yeah,
so
so
pain
and
fatigue
is
the
number
one
thing.
Difficulty
keeping
up
with
activities
might
also
be
more
of
the
orthostatic
intolerance,
for
example.
There's
very
limited
data
on
that
in
kids
under
12,
hopefully
more
soon.
But
I
absolutely
see
kids
just
not
able
to
stand
in,
say,
choir
practice
or
soccer
practice.
Actually,
when
they're
moving
around,
it
tends
to
be
better
during
the
activity
and
then
they
crash
after
the
activity.
But
standing
for
choir
practice
or
during
religious
services,
for
example,
that's
when
the
kid's
like,
I
gotta,
I
gotta
lean
on
something.

SPEAKER_02
25:46

Yeah.

SPEAKER_00
25:46

Or
if
your
kid
is,
you
know,
if
you
go
to
the
checkout
line
at
the
grocery
store
and
your
habit
is
to
send
the
kid
to
the
chair
that's
by
the
door
so
that
they're
not
standing
online
with
you,
that's
significant
too.
A
kid
should
not
have
to
go
sit
down
that
frequently.
So
um,
those,
those
are
the
things
that
tend
to
come
up
first.
GI
issues,
absolutely
early,
early,
early,
mostly
constipation,
but
can
be
diarrhea,
can
be
IBS,
can
be
just
difficulty
with
nausea
and
eating.
I
I
anticipate
that
there
will
be
more
and
more
data
on
food
sensitivities
and
things
of
that
coming
up,
but
it's
still
a
very
vague
cloud
of
symptoms,
but
GI
interference
for
sure.
And
then
we
get
to
adolescence
and
we
hit
menstruation
and
hormones.
And
if
someone
comes
in
and
does
not
have
pain
with
their
periods,
I'm
actually
more
shocked.

SPEAKER_01
26:32

So
much
to
be
said
about
that.
So
much
to
be
said
about
that.

SPEAKER_00
26:36

Yes,
yes.
Which
we'll
get
into.
And
just
to
be
clear,
again,
to
anyone
listening,
painful
periods
does
not
mean
go
get
a
workup
for
hypermobile
Larzanlo
syndrome,
but
it
does
mean
that
pain
with
periods
should
be
taken
seriously.
Your
child
should
not
have
regular
pain
with
their
periods
that
disrupts
their
life.
There
are
things
we
can
do
about
it.
Do
not
let
that
think
that
that
is
a
normal
situation
or
something
that
should
be
put
up
with.
Just
saying
that
loud
and
clear.

SPEAKER_01
27:00

Yeah,
I
agree.
Also,
like
for
me,
I
had
a
lot
of
bruising.
Like
just
random
bruising.
Yes.
All
the
time.
All
the
time
bruising
and
like
feeling
just
dizzy,
or
those
are
things
that
I
often
felt
as
a
kid,
which
were
really
unexplained
to
me.
Absolutely.
I
didn't
know
why.

SPEAKER_00
27:19

Those
are
very,
very
common
symptoms
for
sure.
One
of
the
issues
with
those
is
that
they
can
get
very
much
lost
in
the
in
the
picture.
So
a
a
gripe
I
have
with
our
board
questions,
for
example,
I
this
100%
true.
I
had
a
board
question
during
medical
school,
what's
called
step
one
of
the
board
exams,
that
said,
uh,
you
know,
uh,
a
teenager
comes
in
with
a
lot
of
bruising.
And
I
think
it
was
like
a
like
a
joint
injury,
like
a
shoulder
dislocation.
And
then
it
said,
also,
the
parents
are
in
the
circus.
And
then
they
had
a
picture
of
the
of
the
thumb
hypermobility.
What
condition
might
this
individual
have?
And
I
was
like,
wow,
that's
weirdly
specific
of
you,
board
exam
question
creators.
Thank
you.
Um,
but
but
it
was
just
like
none
of
my
patients
come
in
first
mentioning
the
bruising.
It's
more
like,
oh,
once
we
kind
of
understand
things,
the
bruising
becomes
a
little
bit
more
like
clear,
or
there's
a
parent
worry
that
there's
like
a
blood
disorder
causing
bruising,
and
then
they
mention
it
earlier.
Because
yeah,
it's
it's
prevalent.
I
bruise
like
a
peach.

SPEAKER_01
28:18

For
long
times,
like
they
stay
forever.

SPEAKER_00
28:21

They
do,
they
do.
And
and
that
has
to
do
with
poor
connective
tissue.
Um,
so
there's
poor
healing,
even
though
it's
not
the
same
risk
as
the
vascular
type
of
uh
velars
danos
or
or
some
of
the
other
other
specific
types,
C
V
E
D
S,
um,
there's
still
a
general
vulnerability
to
our
vessels
more
than
the
general
population.
Details
TBD.
But
yeah,
healing
is
slow,
easy
to
bruise,
slow
to
heal.
It
is
what
it
is.
Now,
I
do
want
to
make
a
really
important
point
that
is
very
serious,
which
is
that
in
children,
excess
bruising
can
be
looked
at
as
a
potential
sign
of
abuse.
So
it's
really
important
in
that
setting
to
document
what's
happening.
Because
God
forbid
that
becomes,
you
know,
a
medical
concern
because
we
as
pediatricians
have
a
responsibility.
We
are,
we
are
legally
bound
to
and
ethically
morally
bound
to
make
sure
that
a
kid
in
our
care
is
not
being
harmed.
So
if
we
have
a
concern
for
abuse,
we
have
to
report
that
there's
simply
no
other
option.
However,
very
few
pediatricians,
you
know,
just
in
terms
of
our
training
nationwide,
are
deeply
familiar
with
EDS
in
all
of
its
forms.
So
we
also
have
a
responsibility
to
be
informed
and
aware
of
conditions
that
might
make
it
look
like
abuse.
So
we
know,
you
know,
if
a
kid
has
ateogenesis
imperfecta,
for
example,
um,
or
OI,
uh,
which
is
also
called
brittle
disease.
And
there
are
a
couple
different
types
of
that,
but
you
know,
the
colloquial
name
for
it
says
it
right
there.
The
bones
are
brittle,
they
break
easily.
You're
gonna
see
that
on
a
physical
exam
and
on
the
history.
If
you
get
an
x
ray,
you
can
see
various,
you
know,
stages
of
healing.
So
pediatricians
who
specialize
in
abuse
know
to
look
for
that,
for
example.
But
usually
that's
already
diagnosed.
Hypermobile
other
standos,
not
so
much.
And
there's
debate
about
whether
bone
fragility
is
involved
in
HEDS.
There
is
just
to
be
clear,
there
is
actually
no
strong,
well-done
study
or
data
to
support
that
bone
uh
fragility
is
a
clear
symptom,
but
there
is
also
not
100%
data
to
suggest
that
it
isn't.
We're
in
a
gray
area.
Um,
but
bruising
is
definitely
something
that
happens
with
uh
HSD
and
H
EDS
as
well
as
the
other
types.

SPEAKER_01
30:29

So
and
that's
a
very
serious,
very
important
subject.
I
mean,
and
we've
talked
about
flexibility,
right?
Like
it's
not
just
about
flexibility
with
correct
hypermobility
or
EDS.
When
should
flexibility
raise
a
flag
for
young

Flexibility Versus Instability Red Flags

SPEAKER_01
30:45

girls?
Pain
and
injury.

SPEAKER_00
30:46

Yeah.
So
flexibility,
I
love
that
you
asked
this.
So
these
terms
are
are
used
so
interchangeably
online,
and
I'm
guilty
of
it
as
well.
So
flexibility
has
more
to
do
with
the
muscles
being
toned
and
trained
to
be
able
to
do
things
like
gymnastics
and
ballet.
But
flexibility
also
implies
that
it's
a
muscle
skill
where
you
have
some
control
over
it,
where
you
are
stretching
to
be
flexible.
That's
not
a
bad
thing.
Hypermobility
usually
is
inborn,
although,
you
know,
if
someone
is
very
flexible,
you
can
kind
of
push
and
maybe
look
like
you're
the
same
as
hypermobile.
But
technically,
hypermobility
means
the
ability
of
the
joint
to
go
further
than
the
average
distance.
So
you
can
be
hypermobile
in
one
area,
you
can
be
hypermobile
in
several
areas,
and
we
have
categories
for
that.
But
what's
really,
really
important
is
that
hypermobility
all
by
itself
is
not
a
problem.
Right.
Okay.
It's
not.
If
you
have
hypermobility
with
appropriate
flexibility
and
strength,
go
be
a
gymnast
or
a
belea
dancer.
Um,
you
know,
please
continue
appropriate
care
with
sports
medicine,
anyways.
But
um,
but
you
might
not
ever
have
a
problem
other
than
the
fact
that
you
are
doing
sports.
However,
instability,
because
the
connective
tissue
isn't
doing
its
job
well,
is
where
the
problem
becomes
a
problem.
And
so
you
can
have
hypermobility
without
instability
and
have
no
issues
in
your
entire
life.
I
had
there
was
a
kid
I
went
to,
kid,
young
adult
I
went
to
medical
school
with
who
had
the
most
flexible
and
hypermobile
elbows
that
I
have
ever
seen
in
my
life.
And
he
could
do
push-ups,
he
could
do
pull-ups,
he
was
fine.
He'd
never
had
an
injury.
It
was
just
everyone
in
his
family
had
the
same
thing.
They,
they
went,
when
I
say
they
went
far,
they
went
far.
And
it
was
his
genuine
party
trick.
No
injury,
no
problems.
And
that's
that
was
always
my
good
example
of
like
you
can
have
flexibility,
you
can
have
hypermobility.
If
it's
not
associated
with
instability,
it's
not
really
a
problem.
But
we
use
all
those
words
very
interchangeably.
So
instability
is
where
we
start
getting
the
chronic
pain,
the
uh
injuries
that
don't
make
sense,
um,
large
and
small.
Um,
and
and
that
that
is
where
it
becomes
a
problem.
That
is
where
it
becomes
a
problem.
Yeah.
So
even
things
like
I
would
say
younger,
younger
kids
are
gonna
have
your
frequent
ankle
rolls
walking
along
the
street
and
suddenly
boom,
you
know,
you've
got
another
sprained
ankle.
And
it's
like,
oh
yeah,
no,
we've
we've
done
this
before,
we've
got
another
one.
All
right,
you
know,
because
it
becomes
very
normalized
within
the
family.
Or
I
have
several
families
who
went
to
the
ER
so
many
times
for
something
called
nursemaid's
elbow,
which
is
a
very
easy
dislocation
to
have,
especially
when
you're
young,
it's
actually
so
common
that
we
adjusted
criteria
in
2023
to
not
overdiagnose
because
it's
super,
super,
super
common
in
young
kids.
Because
if
you
have
your
kid
and
you're
holding
them
by
the
by
the
wrists
to
do
something
silly,
like
swing
them
around,
boom,
it
comes
right
out
in
young
children
without
EDS.
But
if
it
happens
frequently
enough
that
you're
in
the
ER
and
the
ER
staff
is
like,
maybe
I'll
just
teach
you
how
to
do
it
so
you
don't
have
to
come
in,
that
is
a
signal
that
I
need
to
hear
about.
If
you
know
how
to
fix
that
yourself,
something
is
wrong.

SPEAKER_01
33:49

Never
put
that
together.
And
now
I'm
like
looking
back
at
like
even
my
kids,
and
I'm
like,
gosh,
you
know,
this
is
so
important
to
pay
attention
to
those
like
minute
details
to
some
are
huge
details
to
providers
who
can
address
this.

SPEAKER_00
34:04

Like
I
want
to
be
clear,
it's
about
the
pattern,
it's
not
one
thing.
It's
never
one
thing.
So
you
know,
you
could
have
a
parent
who
that
elbow
just
got
dislocated
so
many
times
they
didn't
want
it
to
save
time,
but
nothing
else
ever
happens.
The
kid
has
no
other
symptom,
lives
a
wonderful
life,
da-da-da.
Um,
or
it
could
be
part
of
a
picture.

SPEAKER_01
34:23

Right.
Absolutely.

Why Early Recognition Changes Everything

SPEAKER_01
34:24

What
are
the
risks
of
not
recognizing
this
early
and
recognizing
EDS
or
hypermobility
spectrum
disorder
early?

SPEAKER_00
34:32

That's
a
great
question.
And
it's
it's
very
difficult
because
the
data
we
have
is
really
based
um
on
inadequate
care
and
inadequate
recognition.
So
I'm
I
am
extrapolating
when
I
talk
about
these
things.
So
the
younger
kids
I
see,
mostly,
not
100%,
not
as
severely
affected
yet.
I
do
have
a
handful
who
are
very
young
and
very
severely
affected.
And
for
those,
I'm
also
very
considerate
of
doing
the
full
genetic
panel
to
make
sure
I'm
not
looking
at
something
else,
even
outside
of
the
EDS
spectrum.
But
the
younger
kids
usually
are
more
like
clumsy,
if
you
will.
Sorry,
guys.
Yeah.
They're
having
a
hard
time
keeping
up.
They
might
have
pain.
They
absolutely
might
have
pain,
but
they
are
not
already
necessarily
out
of
school
as
much.
They
are
not,
you
know,
every
organ
system
involved
as
much.
Constipation,
yes,
but
you
know,
they
might
not
yet
have
the
headaches
or
the
period
pains,
da-da-da.
So,
what
I
like
to
do
with
the
younger
kids
is
get
them
into
PT
that
focuses
again
on
that
proprioception,
body
awareness,
learning
how
to
listen
to
your
body.
I
again,
I
don't
like
calling
it
setting
limits
so
much
as
body
awareness.
Um,
and
my
hope
is
that
by
doing
those
things
early,
we
are
uh
people
love
the
phrase
like
resetting
the
nervous
system.
But
kind
of,
yeah,
you
know,
if
we
can
do
a
reset
when
you're
young,
you
might
walk
into
things
less.
So
you
might
have
fewer
injuries.
You
might
be
more
aware
of,
oops,
I've
made
an
injury
happen
here.
I
fell
down,
my
ankle
is
gonna
be
a
problem.
Let
me
fix
that
before
it
becomes
a
cascade
of
issues
into
everything
else.
So
you
have
a
toolbox
in
place
already
so
that
you
can
function
better
and
not
have
to
kind
of
dig
yourself
out
of
that
physical
hole
of
symptoms.
Because
the
older
you
get,
the
more
I
see
that
there's
this,
it's
a
hole,
it's
a
backlog
of
all
right,
you
know,
I
can't
eat,
I
can't
sleep,
my
head
hurts
all
the
time,
I
can't
focus
in
school,
the
school
is
mad
at
me
because
I'm
never
in
school.
And
it's
just
it's
everything
always
all
of
the
time
because
it
affects
everything
always
all
of
the
time.
So
that's
what
I
see
the
older
they
get.
Not
everyone's
the
same,
it's
not
identical.
Sometimes
the
symptoms
are
kind
of
manageable
until
adulthood.
For
some
people,
pregnancy
is
a
trigger
for
symptoms
getting
more
severe
or
significant.
Sometimes
there's
an
injury
that's
like
really
severe,
a
surgery,
something
like
that,
and
it
can
kind
of
tip
the
scales
towards
worsening
situation.
But
yeah,
you
know,
the
earlier
we
can
increase
at
least
awareness,
if
not
some
management
and
intervention,
I
think
the
earlier
the
better.
Hopefully
the
data
will
follow.
Yeah.

SPEAKER_01
36:52

Did
that
answer
your
question?
No,
it's
excellent.
I
feel
like
there's
as
a
parent
with
some
a
child
that
potentially
has
hypermobility
of
some
spectrum.
I
it's
something
that
I'm
so
aware
of
because
of
my
own
history,
right?
Like
we
as
parents
oftentimes
put
ourselves
and
maybe
wrongfully
in
our
child's
shoes.
And
it's
like,
did
I
go
through
this?
Is
this,
are
they
experiencing
the
same
things?
And
also
that
can
help
them
get
care
much
sooner
because
we
are
becoming
more
educated
and
more
aware
of
the
things
that,
you
know,
uh
have
affected
us.
And
I
think
we're
starting
to
talk
about
these
things
more.
And
that's
why
I
think,
you
know,
understanding
what
we
should
be
made
aware
of
is
key
to
knowing
where
we
should
go
in
our
journey
and
in
our
care
for
our
kids.

Advocacy Without Triggering The System

SPEAKER_01
37:41

Yeah.
And
how
do
we
advocate
for
our
kids
if
we
don't
know
what
we
sh
are
advocating
for
sometimes,
right?
That's
such
a
good
question.
Yeah.

unknown
37:48

Yeah.

SPEAKER_00
37:49

What
are
we
advocating
for
sometimes,
right?
Let
me
let
me
ask
her.
Um,
so
humor
aside,
I
think
that's
one
of
the
the
biggest
challenges
for
parents.
Um,
and
and
I'm
not,
I'm
not
yet
a
parent,
but
you
know,
have
very
strong
memories
of
my
mom
with
her
tote
bag
with
all
of
the
medical
records.
And
um,
I
will
I
will
never
be
able
to
thank
her
enough
for
the
advocacy
for
both
my
sister
and
myself.
Never.
If
she
hadn't
fought,
we
wouldn't
have
gotten
our
diagnosis.
So,
you
know,
that's
my
people
sort
of
assume
that
I'm
doing
this
mostly
for
catharsis
for
myself.
It's
actually
more
for
my
mom.
It's
more
because
the
burden
of
caretaking
and
unraveling
the
situation
falls
so
heavily
on
the
parents.
Yes,
that
I
saw
what
she
took
on
and
had
to
take
on.
And
I
don't
want
anyone
else
to
have
to
do
that.
So,
in
terms
of
how
and
what
and
when,
uh
again,
you
know,
going
back
to
what
I
said
earlier,
if
a
parent
comes
in
concerned,
you
take
that
seriously.
So,
how
and
what
should
the
parents
be
doing?
That's
a
great
question.
If
if
we're
if
we're
working
with
somebody
who
has
a
diagnosis
for
themselves
as
a
parent,
that
in
and
of
itself
is
just
a
reason
to
be
watching
carefully
because
there
is
an
inheritance
pattern,
even
if
we
don't
have
a
gene
to
identify.
So
keep
it
in
mind.
We
take
a
family
history
for
a
reason.
End
of
end
of
story
right
there.
The
parent
is
still
figuring
it
out
or
has
not
been
diagnosed
themselves.
And
often
because
it
runs
in
families,
there
is
some
limitation
on
recognition
because
it's
like,
oh
yeah,
the
whole
family
just
gets
tired
after
an
outing,
or
you
know,
oh
yes,
the
whole
family
gets
joint
pain
after
whatever,
you
know,
it's
okay.
So
there's
a
normalization
by
accident
that
limits
recognition.
It's
nobody's
fault,
but
it
is
a
funny
pattern.
And
there's
very
often,
if
I'm
doing
the
workup
for
a
teenager,
there's
usually
a
parent
in
the
corner
being
like,
oh,
it's
me.
So
I'm
the
problem.
So
so
there
is
that.
But
how
to
how
to
do
the
advocacy?
Uh
man,
oh
man,
oh
man.
So
first
and
foremost,
your
child
is
your
first
priority,
is
my
understanding.
So
I
will
never
say
to
someone
that
what
they're
doing
is
too
much.
Obviously,
you
know,
there
are
lines
not
to
cross.
Please
don't
yell
at
my
staff.
But
if
you
feel
that
you're
not
getting
the
care
and
recognition
that
your
child
requires
to
be
healthy
and
safe,
you
you
keep
going.
And
uh,
and
there's
danger
in
that,
you
know,
culturally,
the
phrase
doctor
shopping
really
needs
to
be
abolished
because
to
me,
there's
this
fine
line
of
all
right,
the
phrase,
this
horrible
phrase
of
doctor
shopping
is
meant
to
imply
that
a
family,
an
individual
is
is
looking
for
an
answer.
They're
looking
for
a
diagnosis
because
they're
trouble
in
some
fashion
and
and
and
they're
never
satisfied
with
what
they're
getting.
No,
turn
that
phrase
around
and
say,
my
child
or
myself,
we
are
we
are
not
finding
the
answers
and
we
are
suffering.
Should
I
not
keep
going
to
more
doctors
to
try
to
find
the
answers?
You
know,
so
so
we've
got
we've
got
language
that
needs
adjusting.
That's
a
systemic
problem.
And
it
unfortunately
the
burden
falls
disproportionately
on
the
families.
But
generally,
what
I
tell
people
to
do
is
write
down
your
priority
questions.
What
is
what
is
disrupting
the
life,
the
quality
of
life
most,
so
that
we
can
prioritize
what
needs
to
be
looked
at.
Because
even
if
it's
not
HSD
or
H
E
D
S,
I
have
the
privilege
of
being
able
to
figure
out
other
things
too.
So
we
need
to
know
what
is
most
problematic
for
you,
what's
most
bothersome.
I
generally
recommend
against
going
into
an
office
setting,
unless
it's
with
me,
by
all
means
do
it
with
me,
and
saying,
I
saw
online
that
my
kid
feats
these
symptoms
and
I
want
you,
the
doctor,
to
evaluate
for
this
condition.
We
don't
really
like
that.
We're
not
trained
for
that,
also.
We're
trained
in
the
other
direction.
So
when
we're
trained
in
medical
school,
we're
given
a
script
for
how
to
do
a
patient
interaction.
And
it
begins
with,
what
are
you
here
for?
What
is
your
chief
complaint?
I
hate
that
phrase
also,
because
it
means
everything
is
a
complaint.
I
have
a
lot
of
issues
with
the
language
we
use
in
medicine.
So
a
person
comes
in,
they
say,
This
is
what's
bothering
me,
and
then
you
dig
into
the
symptoms
as
a
detective.
And
then
you,
the
physician,
make
a
list
of
what
you
think
is
most
likely.
You
do
an
exam,
labs,
whatever
is
appropriate,
and
you
make
again
a
list
of
what's
now
more
most
appropriate,
and
then
you
treat
accordingly.
The
world
we
have
now
means
that
everybody
comes
in,
and
this
is
not
an
inherently
bad
thing,
but
people
come
in
having
done
their
research.
And
the
phrase,
I've
done
my
own
research,
is
a
great
way
to
trigger
a
pediatrician.
Again,
I
don't
use
that
phrase
flippantly,
because
the
internet
can
be
good
or
bad.
It
depends
what
you
use
it
for.
So
if
you
come
in
and
tell
a
physician
that
you've
done
your
own
research,
I
promise
you
they
will
go.
Because
it
means
most
of
the
time
it
gives
the
physician
the
signal
that
you
have
something
in
your
head
that
you're
not
gonna
leave,
you're
gonna
leave
unhappy
unless
you
get
that
specific
thing.
But
it
might
not
be
medically
the
most
appropriate
thing.
Now,
I
have
been
the
patient
on
the
other
side
of
that
conversation,
and
I
gotta
tell
you,
when
physicians
respond
that
way,
it's
very
unhelpful.
So
these
conversations
are
are
really
sticky
and
and
really
difficult
because
the
internet
can
be
magnificent.
It's
amazing
the
data
and
the
information
we
have
access
to.
And
I
gotta
tell
you,
most
of
the
time
my
patients
come
in
correct.
Right.
They
they
do
the
research,
they
look
things
up,
and
they're
correct.
You
know?
So,
but
anyways,
if
you
come
in
and
tell
the
physician
this
is
what
I
want
done,
that's
almost
always
going
to
not
go
well
just
because
of
what
we're
trained
for,
the
worry
about
doing
inappropriate
medical
testing.
So,
what
I
recommend
instead,
if
you're
really
concerned
about
a
specific
diagnosis
like
HEDS,
go
in
and
say
these
are
the
symptoms
that
are
most
problematic.
They
are
causing
these
issues
with
quality
of
life.
Also,
because
I
want
to
do
my
due
diligence
for
my
child,
I've
been
reading
as
much
as
I
can
and
I
try
to
stick
with
things
that
are
reliable
because
everyone's
gonna
assume
you've
gotten
your
information
off
of
TikTok,
which
sometimes
is
good,
but
not
always.
And
you
can
come
in
with,
you
know,
journal
articles.
Don't
overwhelm
the
physician.
We
only
have
a
finite
period
of
time
and
say,
look,
I'm
I
have
this
concern.
I
know
it
might
be
other
things,
but
I'd
like
to
give
this
thought
so
that
at
least
I
can
be
reassured.

unknown
43:34

Yeah.

SPEAKER_00
43:34

So
a
little
bit
of
humility
on
the
parent
side
so
that
it
doesn't
feel
to
the
physician
you're
about
to
be
in
trouble
with
the
patient
if
you
don't
do
exactly
as
I
ask,
like
hostage
situation.
You
know,
we
don't
want
that.
Um
but
because
of
how
often
patients
come
to
me
having
seen,
you
know,
20,
30,
40
doctors,
that's
common.
They
come
in
with
trauma,
genuine
trauma.
So
it's
really
hard
to
have
those
conversations
gently
and
advocate
for
your
child
gently.
Once
that's
all
built
up,
by
all
means
come
see
me
and
and
tell
me
all
about
those
things
because
it's
actually
valuable
information
for
me.
So
I
know
where
you've
already
been,
what
has
been
ruled
out,
and
what
the
workup
has
looked
like.

SPEAKER_01
44:12

Right.

SPEAKER_00
44:12

But
that's
me.
I'm
set
up
for
that
specifically
and
I'm
asking
for
it,
you
know?
So
it's
hard.
It's
real,
this
is
one
of
the
hardest
things
I
think
a
parent
can
ever
do.

SPEAKER_01
44:21

Absolutely.
And
as
a
parent
who
has
walked
into
doctors'
offices
and
had
discussions
on
this,
one
of
the
things
that
I
always
walk
in
with,
and
this
is
kind
of
just
how
I
have
phrased
it,
is
is
it
worth
considering
X,
Y,
and
Z
based
off
of
these
symptoms?
Yes.

SPEAKER_00
44:39

And
then
follow
up
with,
and
why
not?
If
they
say
no,
why
not?
And
not
to
be
pushy,
but
to
say
something
like,
Thank
you
for
considering
it.
Can
you
explain
to
me
why
not
for
reassurance?

unknown
44:52

Right.

SPEAKER_00
44:53

You
know,
and
then
you
can
say,
can
you
document
that
so
I
can
remember
and
pass
it
on
to
the
next
doctor
so
that
we
can
rule
things
out
and
not
reinvent
the
wheel
every
10
minutes?
What
you
said
right
there
is
beautiful.

SPEAKER_01
45:03

Yeah.

Medical Trauma And The Right Role For Therapy

SPEAKER_01
45:04

And
that's,
I
mean,
I,
as
a
patient
who
has
experienced
medical
trauma,
I
have
to
kind
of
drop
as
a
parent,
I
have
to
be
able
to
drop
my
trauma
at
the
door
because
it's
not
about
me
in
that,
in
that
circumstance.
It
is
about
my
kid.
However,
I
will
tell
you
that
as
a
parent,
sometimes
we
do
experience
medical
trauma
in
efforts
to
help
our
children,
right?
Undeniably.
And
I
do
think
that
it's
worth
considering
getting
someone
to
help
you
walk
through
that
because
what
we,
and
you
can
probably
speak
to
this
a
little
bit
more
than
better
than
I
can,
but
if
we
don't
walk
through
that
and
and
work
through
some
of
that
healing
process,
it
then
goes
on
to
our
kids.
And
the
trust
factor
diminishes
even
with
our
kids
at
an
early
age
because
that
is
how
they're
being
taught
to
approach
medical
care.
And
not
saying
that
all
medical
care
is
this
way,
but
I
do
think
that
we
have
to
be
very
aware.
Like
if
we're
going
and
seeking
help,
there
is
a
chance
we
might
have
medical
trauma
come
from
that.
But
also,
can
we
walk
through
this
in
a
safer
way?
And
is
there
a
way
that
we
can
address
those
traumas
that
then
don't
create
more
of
a
generational
trauma?
And
so
that's
something
that
I'm
I'm
very
aware
of
with
my
kids
because
I
do
have
that.
And
I
have
to
be
very
aware
not
to
pass
that
on
to
my
kids.

SPEAKER_00
46:29

That's
so
that's
so
insightful.
And
again,
I
say
that
this
is
this
has
got
to
be
one
of
the
hardest
parts
about
parenting
when
you
have
a
kid
who
has
a
chronic
illness.
And
I
know
that
my
mother
would
agree.
And
so
my
one
of
the
one
of
the
things
my
mom
says
all
the
time
about
self-care
and
about
being
the
person
helping
the
other
person
as
either
a
caretaker
or
a
medical
professional
is
that
if
a
boat
has
a
leak
in
it,
you
can't
help
the
people
in
the
boat
if
you're
in
the
boat,
also.
And
by
that
she
means,
you
know,
that
it's
important
to
put
a
priority
on
helping
yourself,
at
least
at
the
same
time,
if
not
first,
you
know.
Airplanes,
put
your
own
air
mask
on,
then
help
your
kid.
You
can't
help
your
kid
if
you
don't
have
your
own
oxygen.
And
that
I
think
there's
no
parent
alive
who'd
be
like,
oh
yeah,
that's
my
instinct.
Let
me
help
myself
first.
That's
not
how
that
brain
part
works,
right?
So
you're
right.
Addressing
and
respectfully
managing
one's
own
trauma
is
key.
Cause
I
absolutely
have
parents
who
it's
very
clear
sitting
in
the
room.
They
are,
they
are
holding
it
right
here
and
they
are
scared
and
it
is
valid,
and
it
does
make
it
harder
for
them
and
the
kid
and
for
me.
Not
blaming,
just
truth.
And
so
something
that's
valuable
there
is
being
able
to
teach
your
child
the
language
for
self-advocacy
because
of
one's
own
experience,
for
example.
Um,
but
I
have
seen
it
swing
too
far
where
kids
who
are
very,
very
young
are
incorrectly
using
medical
terminology
because
it's
it
might
have
been
appropriate
for
the
parent's
condition,
but
it's
not
technically
condition
uh
appropriate
for
the
kids'
condition
at
that
time.
But
that's
the
language
that's
been
passed
down.
So
caution
needs
to
be,
you
know,
part
of
the
picture.
But
that
also
means
you
have
to
have
a
physician,
a
medical
team
that's
there
to
help
you.
And
it's
not
only
the
burden
on
the
parent
to
do
all
of
this.
It's
not
fair.
So
I
want
to
emphasize
that
there's
a
hundred
percent
a
role
for
appropriate
uh
uh
mental
health
and
therapy.
And
by
appropriate,
I
mean
we
are
not
going
to
make
the
condition
go
away
by
going
to
therapy.
That
is
not
how
we
use
therapy.
That's
not
an
appropriate
referral.
Please.

SPEAKER_01
48:22

I
can
clap
to
that
all
day
long.
That
is
where
a
lot
of
medical
trauma
happens,
is
when
they
just
refer
you
to
mental
health.

SPEAKER_00
48:29

Yes.
So,
you
know,
and
and
you
know,
the
clinic
that
we're
building,
like
we
know
this,
this
is
important.
But
what's
also
important
is
that
if
you
live
your
life
in
fear
of
pain
and
in
pain,
you're
going
to
need
some
therapy
at
some
point.
It
is
not
fair
to
you
as
a
human
being
to
not
have
someone
helping
you
with
that
burden.
It's
hard.
It
is
hard
to
independently
get
your
brain
on
track
if
that
is
what
you're
dealing
with.
Those
are
facts.
And
so
there
are
people
who
are
trained
with
trauma-informed
care
and
and
and
pain
management
understanding
to
understand
how
these
types
of
chronic
illnesses
affect
you
as
a
human
being
so
that
you
can
at
least
remove
the
layer
of
mental
and
emotional
anguish
that
adds
to
the
physical.
Because
why
do
we
need
the
extra
layer?
We
don't
need
the
oh,
get
rid
of
it.
I
don't
want
it.
Let
me
just
deal
with
the
glue
that
isn't
working
properly.
I
want,
I
want
the
emotional
stuff
dealt
with
separately,
you
know?
And
to
not
do
that,
I
feel
is
a
disservice
both
to
the
kid
and
the
parent.
But
you
got
to
say
that
right
and
you
got
to
say
it
at
the
right
time
because
you're
absolutely
right.
If
that's
what's
offered
instead
of
all
of
the
other,
I've
got
so
many
medicines,
I
got
tips,
I
got
tricks,
I
got
all
the
things.
But
if
I
only
offer
you
therapy,
it's
inappropriate.
Right.
It's
inappropriate.
100%.
Yeah,
it's
it's
negligent,
frankly.
I'm
gonna
get
I
would
agree.

SPEAKER_01
49:49

I'm
gonna
do
that.
And
that's
where
a
lot
of
us
look
back
at
our
own
history,
and
this
is
what
we're
gonna,
you
know,
kind
of
go
into
is
that
with
my
endometriosis
diagnosis,
that
medical
history,
like
to
be
told
you're
crazy
for
your
pelvic
pain,
for
all
the
other
pains
that
you're
experiencing,
and
that
just
be
kind
of
like
it
felt
like
a
scapegoat.
It
felt
like
it
being
invalidated
for
our
symptoms.
And
that's
something
that
like
so
many
of
us
have
experienced.
You
were
talking
about
the
prevalence
of
pelvic
pain
in
EDS
patients
or
hypermobile
um
hypermobile
patients.
There
is
now
some
emerging
research
backing
up
the
you
know,
conditions
that
like
to
party
together,
you
know,
those
A
EDS.
Going
along
for
the
ride,
as
I
like
to
say.
Come
along
for
the
ride.
Yep.
And
and
they
were
not
welcomed
to
this
show,
but
they
were
not
invited,
they
crashed.
They
crashed
it.
That's
right.
And
that's
why,
like,
we
I
have
talked
about
this
before,
but
there's
a
high
prevalence
of
endometriosis
patients
who
are
also
hypermobile
or
have
EDS.
And
there's
now
some
research
to
kind
of
back
that
up.
Can
you
talk
about
this
a
little
bit?

SPEAKER_00
51:01

I'd
love
to.
I'd
love
to.

Endometriosis Links And Pelvic Pain Data

SPEAKER_00
51:03

So
it's
really
it's
just
so
exciting
to
be
a
physician
in
this
field
in
this
moment
of
exploding
research.
Because
20
years
ago,
when
I
was
diagnosed,
there
was
like
just
nothing,
just
absolutely
nothing.
So,
first
of
all,
I
think
it
was
about
a
month
ago
now,
maybe
a
couple
more.
There
was
a
specific
paper
that
was
put
out
having
to
technically
it
included
all
types
of
EDS.
Um,
so
so
the
data
has
a
little
bit
of
limitations
because
of
how
it
was
collected.
It
was
by
ICD
code
or
diagnosis
code.
And
so
we
can't,
we
can't
be
100%
sure
how
to
generalize
or
be
specific.
But
that's
fine
because
it
was
a
it
was
big,
big
enough
numbers
that
it's
still
valuable.
And
what
that
showed
us
is
that
people
who
have
any
type,
but
certainly
generalized,
probably
generalizable
to
the
H
E
D
S
specifically,
seven
times
the
risk
of
having
endometriosis
as
the
general
population.
Holy
moly,
you
know,
like
good
grief.
That's
that's
seven
times,
you
know.
Uh
so
and
then
and
then
there
was
another
paper,
actually,
there
were
several
papers
out
recently
from
the
Norris
lab
at
Medical
University
of
South
Carolina
that
focuses
on
LC
on
those
conditions.
Uh,
and
they
were
looking
in
this
paper
at
the
whole
spectrum
of
symptoms
that
are
reported
in
HSD
and
H
EDS
specifically,
so
not
generalizable.
Uh,
and
they
they
found
that
in
H
EDS
patients,
pelvic
pain
was
uh
present
in
80%,
and
in
HSD,
it
was
66%.
And
and
that's
that's
too
many
percent
to
ignore.
Um
that's
terrible.
And
and
there
was
a
whole
slew
of
of
additional
symptoms
in
both
papers
having
to
do
with
gyneclogic
and
menstrual
related
symptoms
that
are
hard
to
live
with.
Things
having
to
do
with
with
pain
during
sex,
pain
that
comes
with
your
period,
if
your
period
is
regular,
or
if
you're
someone
who's
having
a
period
very
frequently,
inappropriately
frequently,
was
on
the
list
too.
This
is
a
this
is
a
huge
life
problem
for
a
not
insignificant
part
of
the
population.
If
we
are
all
agreeing
that
HSD
and
HEDS
is
actually
maybe
one
in
500,
maybe
closer
to
one
in
250,
that's
enormous.
Those
numbers
are
big.
I'm
not
gonna
do
that
math.

SPEAKER_01
53:09

No.
No.
And
the
prevalence
of
endometriosis,
they
say
one
in
10,
but
likely
they're
looking
at
one
in
seven.
And
if
you
correlate
that
with
the
percentage
of
HEDS,
EDS,
like
I
gotta
assume
it's
gotta
be,
you
know,
it's
there's
gotta
be
some
crossover
there.

SPEAKER_00
53:26

It
is
worth
looking
into
based
on
those
numbers.
Let's
put
it
that
way.
It
is
absolutely
worth
looking
into.
And
the
more
we
look
into
it,
the
more
we
find
forgive
the
pun
connections.
Right.
But,
you
know,
it's
also
it's
hard
to
get
big
numbers
because
if
we
historically
consider
these
things
rare
or
not
happening
much
or
we
don't
record
it
adequately,
then
where
do
you
get
your
numbers?
So
it's
that
is
always
a
limitation
in
research,
unfortunately.
We're
getting
better
at
it.
That's
the
silver
lining.
This
is
huge.

SPEAKER_01
53:50

Yeah.

SPEAKER_00
53:50

Yeah.

SPEAKER_01
53:50

Yeah.

SPEAKER_00
53:51

But
you
were
mentioning,
you
know,
the
not
being
believed
aspect.
I
think
there
is
nothing
you
can
do
to
harm
a
young
person
growing
up
more
than
not
believe
them.

SPEAKER_01
53:58

Yes.
100%.

SPEAKER_00
54:00

Yeah.
Because
not
only
are
you
telling
them
that
we're
not
going
to
help
you
because
of
your,
you
know,
I
don't
believe
your
symptoms,
so
I'm
not
going
to
give
you
care
to
make
your
life
better.
You're
also
telling
them
that
you
shouldn't
trust
your
own
sense
of
self.
You
shouldn't
expect
safety
in
the
medical
realm.
You
shouldn't
expect
to
have
your
needs
met.
And
you
shouldn't,
you
shouldn't
believe
yourself
when
that
is
happening.
And
if
you
start
being
told
that
when
you're
a
small
person,
that's
horrific.
That
is,
that
is
how
we
end
up
with
systemic
problems
like
doctors
taking
advantage
of
patients
and
things
like
that,
because
a
patient
doesn't
learn
to
say
when
something
is
a
problem
because
they've
been
taught
not
to.

SPEAKER_01
54:40

And
it's
interesting
to
think
about
that
because
I'm
sitting
here
thinking
about
like
when
I
was
potty
training,
right?
We
tell
our
kids,
listen
to
your
bodies.
Well,
if
you
go
in
and
you
you've
trained
your
kids
to
listen
to
their
bodies,
how
does
it
feel
inside?
Do
you
know
when,
or
you
know,
like
when
they're
feeling
sick,
what
do
you
feel?
You
know,
we're
training
this
from
a
very,
very
early
age.
If
they
are
going
into
a
provider's
office
in
a
place
where
they
should
be
able
to
trust
the
outcome,
and
they're
being
told
they're
not,
you
know,
what
they're
listening
to
isn't
valid,
it
has
to
have
deep
repercussions
for
that.
Yeah.

SPEAKER_02
55:13

Right?

SPEAKER_01
55:14

Like
long-term
repercussions
for
that.
So,
and
and
we've
said
this
within
the
endometriosis
space
for
so
many
years
is
part
of
the
healing
process,
part
of
feeling
like
we
are
being
heard
is
being
validated,
right?
Even
if
you
don't
know
what
the
sign
or
what
the
symptom
is,
you
can
say,
I
believe
that
you
are
feeling
this
way.
I
just
don't
know
what
it
is
yet.
Absolutely.

SPEAKER_00
55:40

There
is
so
much
power
in
that,
in
that
sentence.
And
I'll
add
as
well
that
especially
for,
you
know,
the
younger
it
starts,
if
you
tell
a
person
that
their
symptoms
aren't
real
and
that
it's
not
happening,
they
still
need
to
live
their
life.
So
by
the
time
they
get
to
my
office,
they're
often
very
not
sure
of
not
only
what
symptoms
they're
experiencing,
because
there's
sort
of
a
fight
or
flight
situation.
Your
brain
is
over
here
and
your
body
experiences
are
over
there,
and
they're
kind
of
separate.
So
the
parents
are
often
in
there
with
their
notes
saying,
okay,
well,
my
kid
gets
home
from
school
every
day
expressing
pain
and
da-da-da.
But
the
kid's
like,
I
I
don't,
I
don't
remember.
I've
put
it
in
a
box
over
there
so
that
I
can
make
it
through
my
day.
But
then
they
also
come
in
and
I
will
ask
things
like,
all
right,
tell
me
about,
you
know,
your
pain
or
whatever.
And
they'll
say,
I
have
the
normal
amount.
Right.
You
should
not
have
any
pain.
You
are
12.
If
you
have
pain,
I
want
to
know
about
it.
And
they're
like,
pain's
not
normal.
Well,
you've
never
lived
in
another
body.
You've
never
lived
in
another
body.
How
on
earth
are
you
supposed
to
make
a
distinction
between
normal
and
not
normal
unless
there's
been
a
change
in
your
body?
Sure.
But
if
your
body's
always
had
a
connective
tissue
disorder
that
does
this,
why
on
earth
would
you
recognize
what's
not
normal?
I
have
kids
who
get
on
my
table
all
the
time
and
I
will
notice
that
like
a
shoulder
is
dislocated
and
they
just
consider
it
normal
because
it's
been
out
for
I
don't
even
know
how
long.
And
then
I'll
put
it
back
and
they'll
say,
This
is
how
I'm
supposed
to
feel.
And
then
they
can
move
comfortably
and
some
of
their
fatigue
is
relieved
and
things
like
that,
and
they
are
in
genuine
shock.
I
cannot
tell
you
how
often
the
first
thing
this
always
gets
me,
the
first
thing
out
of
my
patient's
mouth
when
I
say,
Oh,
yes,
you
definitely
have
this
condition
is
you
mean
I'm
not
crazy.
Yeah.
Teenagers.
You
mean
I'm
not
crazy?
For
that
to
be
the
first
thing
that
you
say
when
you
have
a
diagnosis
that
you
were
pretty
sure
of,
you
came
in
thinking
this
is
the
thing
you
have.
That's
why
you're
in
my
office.
And
then
the
first
thing
you
say
is,
you
mean
I'm
not
crazy?

SPEAKER_01
57:33

Yeah.
I
mean,
that's
ouch,
it's
mind-blowing.
And
also,
we
are
really
good
at,
you
know,
that
word
gaslighting.
And
I
I
don't
love
the
word
all
the
time,
but
like
it
also
means
what
it
means,
you
know,
like
we
do
gaslight
ourselves
into
thinking
that
it's
not
a
real
symptom.
And
if
we're
always
doing
that
from
an
early
age,
like
we
don't
know
any
different.
You
know,
and
I
even
have
said
that
before
of
like,
I
don't
know
what
normal
feels
like.
But
what
is
normal?
How
do
we
put
that
into
how
do
we
put
normal
into
words?
Like,
I
don't
think
there
is
a
normal,
if
we
will.

SPEAKER_00
58:06

But
for
me,
as
the
physician,
if
they
come
in
with
a
concern
about
how
something
feels
and
it
relates
to
how
I
feel,
I
can
usually
be
like,
oh,
not
sure
that's
normal.
Let's
think
about
that
together.

SPEAKER_01
58:17

Right.
Yeah.
Absolutely.

Being Believed And Learning What’s Normal

SPEAKER_01
58:20

As
a
physician,
if
someone
comes
into
your
office
with
pelvic
pain,
should
we
consider
both
EDS
and
endometriosis,
given
the
new
research
that's
come
out?
Should
we
always
kind
of
look
at
both
of
those
as
being
differential
diagnoses?

SPEAKER_00
58:35

Because
that's
a
great
question.
I
would
not
say
that
the
data
is
is
is
substantial
enough
to
say
everyone
who
comes
in
with
pelvic
pain
should
be
worked
up
for
hypermobility.
But
everyone
with
pelvic
pain
who
has
other
systemic
concerns,
other
joint
pain,
that's
gonna
nudge
me
in
that
direction
for
sure.
But
there's
no
specific
guidelines
about
that
available
yet.
This
is
all
literally
new
within
the
last
several
months.
So
we're
headed
in
the
right
direction.
And
and
genuinely,
I'm
of
the
opinion
that
we
should
be
screening
people
for
hypermobility
and
well,
specifically
instability
when
they're
young
anyway.
So
I'm
I'm
a
little
biased
there.
Uh
but
certainly
if
they're
coming
in
and
they've
got
the
pelvic
pain
plus
many
other
things.
And
again,
I
dislike
this
phrase,
but
what
we
what
we
say
in
medicine
is
if
you're
if
your
review
of
systems,
which
is
to
say
you're
checking
head-to-toe
other
body
systems
to
make
sure
we're
not
missing
anything,
if
it's
called
pan
positive,
so
you
got
the
headaches,
you
got
the
nausea,
you
got
the
the
diarrhea,
the
constipations,
you
know,
dizzy,
all
the
things.
Every
system
has
something
clicked
in
the
chart,
pan
positive.
If
you
are
somebody
who
has
pan
positive,
we
got
to
connect
those
dots.
Then
I'll
start
screening
100%.

SPEAKER_01
59:46

Interesting.
See,
and
as
a
patient,
I
sit
here
and
I'm
thinking,
I
wish
someone
would
have,
given
my
symptoms,
taken
a
whole
you
know,
assessment
of
head
to
toe,
which
is
hard
to
do
in
a
15-minute
appointment
the
way
that
our
system
is
built
currently,
right?
Like
you
have
15
minutes
as
a
doctor
to
like
really
get
to
the
to
the
crux
of
what's
going
on.
Impossible.
Absolutely.
And
so
that's
what
makes
it
really
hard,
I
think,
for
things
like
endometriosis
and
EDS
or
H
EDS,
because
you're
not
given
the
time
needed
to
really
fully
assess
the
whole
system,
right?
We
are
given
a
silo
of
a
system
as
opposed
to
the
entire
system.
And
so
I
think
that's
what's
really
challenging,
but
there
are
some
key
things
that
we
can
be
asking
that
can
maybe
differentiate
what
direction
we
go.
As
a
patient,
how
should
we
walk
in
when
we
have
concerns
of
both
endometriosis
or
EDS?
What
are
some
main
questions
that
we
need
to
ask
when
we
walk
in
that
door?

Part Two Preview And Next Steps

SPEAKER_01
1:00:48

This
conversation
doesn't
end
here.
And
honestly,
part
two
is
where
we
get
into
some
of
the
things
I
wish
more
families
were
actually
being
told.
We're
talking
about
how
to
advocate
for
your
child
and
appointments
when
something
feels
off,
how
to
walk
in
with
clarity
around
your
expectations
and
what
you
want
out
of
the
visit,
and
what
to
do
when
you're
not
being
heard.
We
also
go
into
the
overlap
between
neurodivergence,
endometriosis,
and
EDS,
and
how
that
can
completely
shift
the
way
we
understand
what
kids
are
experiencing
in
their
bodies.
And
then
we
get
really
practical
pain
management
tools,
support
strategies,
and
what
it
actually
looks
like
to
help
kids
feel
more
supported
day
to
day.
So
if
you're
sitting
here
thinking,
this
sounds
familiar,
or
this
might
be
my
kid,
I
really
want
you
to
come
back
for
part
two.
There's
a
lot
more
we're
going
to
unpack.