1. What
is
Ehlers-­‐Danlos
syndrome?
The
Ehlers-­‐Danlos
syndromes
are
inherited
in
the
genes
that
are
passed
from
parents
to
offspring.
More
than
1.5
million
people
around
the
world
have
Ehlers-­‐Danlos
syndrome
(EDS).
Someone
with
EDS
is
born
at
least
every
half
hour,
and
many
won’t
know
what’s
wrong
with
them
unEl
it's
too
late
for
them
to
be
helped.
EDS
is
largely
unknown.
Recent
evidence
indicates
it
may
be
one
of
the
most
under-­‐diagnosed
disorders,
because
there
is
no
cure
and
many
doctors
consider
EDS
too
rare
for
anyone
to
have.
Ehlers-­‐Danlos
syndrome
is
a
group
of
disorders.
Each
type
of
EDS
is
defined
as
a
disEnct
geneEc
problem
in
making
or
using
one
of
the
types
of
collagen.
Collagen
(like
glue)
is
used
by
the
body
to
provide
strength
and
elasEcity
to
Essue;
normal
collagen
is
a
strong
protein
that
allows
Essue
to
be
stretched,
but
not
past
its
limit,
and
then
is
safely
returned
to
normal.
With
badly
built
or
processed
collagen,
some
of
the
soM
Essue
can
be
pulled
further
than
is
safe,
causing
damage.
Collagen
is
the
body's
most
abundant
protein
and
can
be
found
almost
anywhere,
in
skin,
muscles,
tendons
and
ligaments,
blood
vessels,
organs,
gums,
eyes,
and
so
on.
EDS
has
a
very
wide
range
of
symptoms
because
of
how
widespread
in
the
body
collagen
is.
EDS
causes
joint
hypermobility
(loose
or
unstable
joints
that
slip
or
dislocate);
early
osteoarthriEs;
Essue
fragility,
skin
that
tears
and
bruises
easily,
blood
vessels
and
internal
organs
such
as
intesEnes
that
can
rupture
easily;
eye
problems
and
gum
disease.
Some
symptoms
can
be
seen,
but
not
all;
EDS
is
largely
invisible.
Pain,
for
instance,
can
be
widespread—collagen
makes
up
the
fascia,
the
Essue
sheet
that
holds
everything
together
and
wraps
around
your
enEre
body—but
the
pain
will
not
show
up
in
MRIs
or
X-­‐
rays.
There
is
no
cure
for
EDS
but
many
symptoms
can
be
addressed
as
they
arise.
Free
informaEon
and
resources
from
Ehlers-­‐Danlos
NaEonal
FoundaEon
can
be
found
at
www.ednf.org
or
reaching
the
foundaEon
on
Facebook.
[WriVen
by
Mark
C.
MarEno]