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Ever been told you’re “just bendy”? We sat down with Laura Bloom, president and CEO of The Ehlers-Danlos Society, to unpack what Ehlers-Danlos syndromes and hypermobility spectrum disorders really mean for everyday life and long-term health. In five focused minutes, we move past myths and into practical clarity: which EDS subtypes have known genetic variants, why hypermobile EDS still lacks a single marker, and how that uncertainty affects diagnosis, referrals, and care.
Laura breaks down the 2017 criteria—13 recognized types—and explains why all but the hypermobile type are rare to ultra-rare with identifiable genetic causes. The conversation then zooms in on the hypermobile end of the spectrum, where research and clinical experience point to heritability and complex mechanisms even without a validated test. You’ll hear how a connective tissue condition can reach far beyond joints, showing up as gastrointestinal challenges, ENT issues, bladder and gynecologic symptoms, autonomic features, and possible mast cell involvement. That breadth helps explain why so many patients bounce between specialties without a unifying plan.
The most compelling shift ahead is a diagnostic criteria update expected in December 2026, with early findings suggesting hEDS and HSD belong on a single spectrum. Unifying the framework could streamline evaluation, reduce confusion, and make it easier to access coordinated, multidisciplinary care. For patients and clinicians, that means better language, clearer expectations, and a stronger foundation for research and education.
If you’ve struggled to be believed or to connect the dots across systems, this fast, expert-led guide offers a grounded way forward. Subscribe for more five-minute expert answers, share this with someone who needs clarity, and send us your top question so we can bring the right voices to the mic.
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SPEAKER_00
0:00
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Introducing Laura Bloom And Her Work
SPEAKER_00
0:41
Today
I
am
honored
to
welcome
Laura
Bloom
to
the
table.
Laura
is
the
president
and
CEO
of
the
Ellers
Downlow
Society,
where
she
leads
global
efforts
in
research,
collaboration,
education,
and
care
advancement
for
people
living
with
Ellers
Downlow
Syndrome,
hypermobility
spectrum
disorders,
and
related
conditions.
What
makes
Laura's
work
so
powerful
is
that
it
sits
in
the
intersection
of
medicine,
policy,
and
lived
experience.
She's
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.
What EDS And HSD Are
SPEAKER_00
1:29
Can
you
give
us
just
a
quick
overview
of
EDS
and
what
it
is
and
how
the
different
subtypes
vary?
SPEAKER_01
1:37
Absolutely.
So
there's
the
Alice
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
Diagnostic Criteria And 2026 Update
SPEAKER_01
2:22
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
uh
giving,
I
think,
the
community
what
they
need,
which
is
answers
and
more
clarity,
because
the
2017
criteria
is
far
from
perfect.
SPEAKER_00
2:58
Yeah.
Why Hypermobility Is Misunderstood
SPEAKER_00
2:59
Why
what
do
you
think
is
the
biggest
misunderstanding
about
hypermobility
and
why
it's
minimized?
SPEAKER_01
3:05
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
Beyond “Bendy”: Systems And Comorbidities
SPEAKER_01
3:20
HSD?
Well,
largely
it's
that
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
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,
gynee
issues,
it's
it's
really
so
many
different
things.
And
within
each
of
those
is
a
spectrum
and
it
affects
people
differently.
And
then
of
course,
that's
that's
largely
hypermobile
EDS
and
chest
D.
And
then
with
the
rarer
types,
there's
obviously
a
lot
more
severe
complications
that
you
Closing And How To Send Questions
SPEAKER_01
4:26
can
see
as
well.
SPEAKER_00
4:26
That's
a
wrap
for
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quick
connect.
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hope
today's
insights
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