Download to read offline
![If
you’re
curious,
check
out
this
ar2cle
I
found.
It
does
a
be8er
job
then
I
could
at
explaining
why
I’ve
been
sick
so
long.
I
have
a
gene2cally
inherited
disease
called
Ehlers-‐Danlos
Syndrome
[EDS].
I
was
a
long
&
frustra2ng
8
years
being
misdiagnosed
again
&
again.
In
2006
an
EDS
expert
at
U
of
M
made
the
defini2ve
diagnosis
aNer
two
Beaumont
docs
started
puPng
the
puzzle
pieces
together.
ANer
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,
fa2gue,a
stroke
&
several
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
&
fa2gue.
I’ve
tried
every
combina2on
of
medica2on
you
can
imagine
and
aNer
10
years,
the
toxic
side
effects
became
worse
then
the
disease
itself.
Everything
changed
when
I
found
a
pain
doc
who
transi2oned
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
2me
&
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
be8er
but
my
jaw
con2nues
to
deteriorate
&
I
had
yet
another,
cranial/maxillofacial
surgery
in
September.
The
goal
is
to
correct
my
bite
with
bone
graNs
in
my
sinus
&
implants
to
help
me
talk,
chew
&
swallow
much
be8er.
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
Na2onal
Founda2on
explain
it
in
detail.
;D
EDNF
[Elhers-‐Danlos
Na0onal
Founda0on]
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
un2l
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
dis2nct
gene2c
problem
in
making
or
using
one
of
the
types
of
collagen.
Collagen
(like
glue)
is
used
by
the
body
to
provide
strength
and
elas2city
to
2ssue;
normal
collagen
is
a
strong
protein
that
allows
2ssue
to
be
stretched,
but
not
past
its
limit,
and
then
is
safely
returned
to
normal.
With
badly
built
or
processed
collagen,
some
of
the
soN
2ssue
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
osteoarthri2s;
2ssue
fragility,
skin
that
tears
and
bruises
easily,
blood
vessels
and
internal
organs
such
as
intes2nes
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
2ssue
sheet
that
holds
everything
together
and
wraps
around
your
en2re
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
informa2on
and
resources
from
Ehlers-‐Danlos
Na2onal
Founda2on
can
be
found
at
www.ednf.org
or
reaching
the
founda2on
on
Facebook.
[Wri8en
by
Mark
C.
Mar2no]](https://image.slidesharecdn.com/ehlersdanlos-121129183600-phpapp02/85/Ehlers-danlos-1-320.jpg)
Ehlers danlos
- 1. If you’re curious, check out this ar2cle I found. It does a be8er job then I could at explaining why I’ve been sick so long. I have a gene2cally inherited disease called Ehlers-‐Danlos Syndrome [EDS]. I was a long & frustra2ng 8 years being misdiagnosed again & again. In 2006 an EDS expert at U of M made the defini2ve diagnosis aNer two Beaumont docs started puPng the puzzle pieces together. ANer 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, fa2gue,a stroke & several 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 & fa2gue. I’ve tried every combina2on of medica2on you can imagine and aNer 10 years, the toxic side effects became worse then the disease itself. Everything changed when I found a pain doc who transi2oned 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 2me & 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 be8er but my jaw con2nues to deteriorate & I had yet another, cranial/maxillofacial surgery in September. The goal is to correct my bite with bone graNs in my sinus & implants to help me talk, chew & swallow much be8er. 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 Na2onal Founda2on explain it in detail. ;D EDNF [Elhers-‐Danlos Na0onal Founda0on] 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 un2l 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 dis2nct gene2c problem in making or using one of the types of collagen. Collagen (like glue) is used by the body to provide strength and elas2city to 2ssue; normal collagen is a strong protein that allows 2ssue to be stretched, but not past its limit, and then is safely returned to normal. With badly built or processed collagen, some of the soN 2ssue 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 osteoarthri2s; 2ssue fragility, skin that tears and bruises easily, blood vessels and internal organs such as intes2nes 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 2ssue sheet that holds everything together and wraps around your en2re 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 informa2on and resources from Ehlers-‐Danlos Na2onal Founda2on can be found at www.ednf.org or reaching the founda2on on Facebook. [Wri8en by Mark C. Mar2no]