1. If you’re curious, check out this article I found. It does a better job then I could at explaining
why I’ve been sick so long. I have a relatively rare disease called Ehlers-Danlos Syndrome
[EDS]. I’ll skip the years of misdiagnosis & start in 2006 when an EDS expert at U of M made
the definitive diagnosis. After examining my family history, (Provost/Buckley side), it was
clear that my Mom, Grandma, my Aunt Helen & cousin Greg had EDS of varying types &
severity. EDS explains my joint pain, falls, insomnia, fatigue & miscarriages. These symptoms
started when I was just a kid & became disabling & chronic in my 30’s.
There is no treatment or cure for EDS so, at best, doctors can offer help managing chronic
pain & fatigue. I’ve tried every combination of medication you can imagine and after 10 years,
and for me, the toxic side effects became worse then the disease itself. Everything changed
when I found a pain doc who transitioned me off the serious meds slowly & safely. It was like I
came out of a coma & the nightmare became tolerable. It’s been 2 years & I improve more
every day. There is no way to predict the road ahead because nothing can slow or stop the
progression of this disease. I plan on making up for lost time & enjoy this remission of sorts
for as long as it lasts.
Pat & I celebrated our 25th anniversary this summer by taking an Alaska cruise & we went
dogsledding on a glacier. That qualifies as a miracle in my book. I’m much better but my jaw
continues to deteriorate & I had yet another, cranial/maxillofacial surgery in September. The
goal is to correct my bite with bone grafts in my sinus & implants to help me talk, chew &
swallow much better. My brother told me recently he’s never sure what to say when people ask
him how I’m doings. He does just fine & keeps it simple by saying, “she has her good days &
bad days.” I’ll let the EDS National Foundation explain it in detail. ;D
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]