 
Ehlers Danlos Syndrome
and Me
EHLERS-DANLOS SYNDROME,
TYPE IV, AUTOSOMAL DOMINANT-VASCULAR TYPE
Description
- Clik on the Description link to be taken to a
wider description of EDS/VEDS and also meet some
"family members" - well- we consider
ourselves "family" - at the Various EDS/VEDS
support groups - If you aren't added to this page
and would like to share your story- contact me
and I'll get you added asap.
Near the bottom of this
page is an option to hear *Bette Davis Eyes* midi
as you read the story below-
Pouring you a cup of
coffee and gently shoving a footstool your way-
~~~~~~~~~~~~~~~~
Hi, I have
recently been diagnosed with ehlers danlos
syndrome- * Recently to me - as time to me now
seems to blend together*... I have been
housebound for the last 2 yrs this coming January.
I have experienced many surgeries etc within this
time... I felt like I had moved into the hospital
to tell you the truth. I have gone from
wheelchair, to walker, to cane and back to
beginning and end 3 or 4 times during this
escapade.
Although I have
EDS- I was uninformed of it until I had a double-ruptured
aneurysm in my right calf also known as
compartmental syndrome. The first hospital
sent me home with a few valiums and when the pain
did not stop, I went back only to be told to go
home that there was nothing wrong with me.
I had a bruise from heel to thigh and so much
pain I could not move.
Finally, 3rd
ambulance ride and pain so excruciating that I
couldn’t even talk English... I was taken to
another hospital where they gave me morphine,
enough for a 200 lb man... The doctor told my dad
this amount of morphine should have knocked
someone my size totally out - but it just
relieved the pain enough that I could finally
describe what was going on with me to the doctor.
The hospital sent for the MRI's and X-rays from
the first hospital and spotted right away - FROM
THOSE XRAYS and MRI'S that I had a double
ruptured aneurysm... * How could the other
hospital overlook that? * The doctor then ran
some kind of compression measuring test in my leg...
where they freeze it, ** It never froze ** then
insert a small measuring device inside a small
hole to measure the compression * Where it
should have been in the 20s * I guess * it was in
the *70's * but the circulation was fine which
shocked the drs because in order to have one,
normally the other goes right along with it.
The doctor then did the proper surgery, cut off 8
inches of vein and tied it etc etc.... needless
to say that side of my leg is pretty much dead...........
I have been unable to drive since due to not
being able to gauge pressure used on it...
I refer to EDS {
Ehlers Danlos Syndrome }, as - China doll
syndrome... Seems like every time I turn
around I gain another bruise and yes, I bruised
easily as a child as well and so did one son who
is now in heaven and my 10 yr old also bruises
quite easily... my sixteen yr old seems to have
lucked out and doesnt have this problem thank God.
Anyhow to get
back to my original story, I had a rehabilitation
worker coming to my house 3 times a week to help
me regain strength in my leg . I was in a
wheelchair then using a walker except for
distances and then a cane, which surprised the
doctors but I am a feisty fighter.. On the way
out of a truck for a dr appointment as I was
sliding out of a pickup truck my knee lightly
slammed into my walker- o gosh I cant even
describe the pain I felt... It swelled up like a
balloon... this drs office was down a long hall
and by the time I got to the waiting room, the
pain was excruciating- but this dr was not for
that... so I went through the appointment... had
one heck of a time getting on his table, then
made the long painful walk back to the truck
which took me more than 20 minutes to get into
because the leg was now 3 times the normal size.
I most likely, should have went to hospital but
after coming as far as I had in using walker etc,
I had little desire to be in a hospital scene
again.
Plus, I had a
Drs appointment the next week with the dr that
performed the surgery on the aneurysms. His
office was not down a long corridor but I still
had great difficulty getting in a vehicle, out of
a vehicle, onto a table, off the table... he
looked at it and ordered an MRI, so the next few
days, again in and out of a vehicle, table
climbing etc for the MRI... Dr called me after I
got back home and gave me more bad news... I had
a ruptured tendon and not in a good spot. In fact-I
ended up with surgery on that he had to sew the
it to muscle rather than bone - which is not a
good thing but works for the time being -
.......... so 30 stitches for first surgery, 30
staples in knee of other leg for the rupture
surgery, and yep was definitely back in a
wheelchair.......... a few months later, I was
sent to rehab......... which was also very
painful as the person that was supposedly helping
me to get the knee to bend again had no sympathy
whatsoever for pain and knew little about EDS.
My mother drove me back and forth to my
appointments - at this point I was ordered to
wear a leg brace that went from ankle to thigh -
riding was almost unbearable- I had to sit
crossways in the backseat so that my legs could
be up. Not being able to bend the one leg made
getting in and out a chore.
Before I could
get those sessions done... I had been up all
night in pain in August of same year and went to
set a Nextel cell phone on desk beside me only to
have it fall and barely knick my right leg, the
one with the aneurysm surgery... a lump started
to show so I grabbed cane and headed to kitchen
for ice and by the time I got back to the office,
It was 3 times normal size, again... excruciating
pain and a holler at my mother who lives down the
road and yet another hospital stay. The
cell phone caused a lot of damage and honestly it
did barely brush up against me. They kept
me on an ice machine for a week, gave me morphine
and said its not infected we will send you home...
still swollen.......... after so many hospital
stays and so many pointless stabs with a needle
for IV's at this point I did not care, I wanted
to go home!
They had to
change my IV every 3 hrs because my veins kept
bursting... they talked about a picline and I
refused... not really sure why but I did refuse
even though they claim it doesn’t hurt and
you are wide awake for the procedure...
I came home to
live in wheelchair for another 3 months as it had
not went down and dr visits were a pure torture.........
one visit the dr decided to *drain* it.........
he stuck a needle in and got a cup or so of blood
and a few clots out, bandaged me up and sent me
in pain back home with another appt the following
week to see if it helped... well it did not help...
and by now the pain was tremendous... I was
almost crawling to bed... I even began
laying head on bed legs in wheelchair, getting
approx 1 hr of sleep if that due to such pain...
The infection
was horrible... they did not even put me on
antibiotic......... but that next office visit is
one I will never forget... they had me lay on the
table, a nurse held me down as he poked that darn
needle in with hopes it would freeze, well it
never did but I don’t think he believed me,
he had nurse hold me down tight as he LANCED it
wide open and took forceps and pulled out several
more clots and then proceeded to keep stabbing
that freezing needle into my leg as my
fingernails made imprints in his cement wall.........
He wrapped it
up, gave me more pain meds, sent me home... and
needless to say, it did nothing either.........
the infection began to eat me alive and I was
finally hurting enough that I ended up with yet
another ride to the hospital and this time, they
decided to operate...
A dr I had not
met, put me under and cut out the infection,
leaving quite a hole- he wanted a nurse to pull
out a bit of the packing just to a certain point
but I didn’t allow it as it hurt too much
and I told her I'd do it myself- I did try to do
it- I sat there on the hospital bed and pulled a
bit at it- then stopped- then tried again- it
hurt way too much and finally the dr said never
mind- I guess I really frustrated him. Only if he
could have felt that pain- I am sure he would not
have done it either! He needed to do a second
surgery same week to clean up the hole he made...
so 2 surgeries in one week and after the second
surgery he came into my room and said he had to
clean the packing he had put in it... fine I
said, * thinking he would put some liquid on it...
* omg, I cant tell you.......... he did NOT put
any liquid anything on it and just YANKED that
packing out........... Tears flew...........
other drs lips hit the floor and he just said he
had to do that to de* breed * it..............
then he left, had a nurse pack me back up and the
other 3 drs stayed with me and comforted me
asking how I did not swear during that..........
I said how could I swear I had no breath, all I
had were uncontrollable tears...
From then On - I
would let NO ONE touch it but me......... I had a
nurse coming to the house for the third time-
third time, meaning- 3rd time of at least six
weeks visitation - and she tried and I let her
know she could check it, measure it, or whatever
but that I would be lubricating it and changing
the packing myself. She came 3 or 4 times a
week for 3 months or so and every time the
hole almost got a covering over it something
would stress me and it would re open but never as
large as it was from the operation.
I have a whole
drawer of packing/bandages etc.... I wear and
have worn for years medical hose... I am seeing a
family doctor now and have to see specialists not
as often which is a nice feeling after being in
and out of the hospital so often.
He knows and understands my EDS and has me on
many medications for the pain, including morphine.
So, even though it does not take the pain totally
away, it does allow me some very much needed
sleep every three nights or so.
If any of you
are interested in seeing the pictures of what I
refer to as * cell phone abuse * before and after
shots... they are placed in the table below for
viewing- but please dont eat just before you view
them...The graphics are not pleasurable and for
anyone who has a touchy stomach - it may be wise
to not click on those links.
Links to the Pictures of
before and after shots of the cell phone damage-
I
am a 41 yr old divorced mom of 3 boys, but my
oldest son passed away in 1997 from an aneurysm
rupture on his kidney at age 12. Yes,
now I am thinking he most likely had
undiagnosed EDS as most do go years without a
diagnosis......... Had this been known, he
might have been able to get proper care and still
be alive today. He did not get hurt, fall,
or anything of the such... in fact, he was taken
to emergency by my mother and myself for an
earache that had kept him up the night before-
and then while taking a shower - preparing for a
visit to the doctor - he came flying out of the
bathroom stating that his side- stomach- was
hurting pretty bad. He no longer wanted to go to
a doctor- he begged to be taken to a hospital. I
have also documented a story on Kenny’s
happenings and will place that on this site at
some point. I have made a memorial page for him
and will share the link here with you all but the
documentation of the story is not placed on the
site as of yet. It is indeed pass worded as he is
/ was just a child of 12 so if you would care to
view it- I am sorry - but you will need to email
me for the password and user ID-
^&^Kenneth Brett^&^
If
interested Email Me to be able to view his
entire sight.
I have been
fighting for disability since this mess began -
to this day I can not stand long, sit long,
carry items etc, am sure you can all imagine...
that has been a 2 yr process and so far no
results but hopefully soon......... I have a lot
of faith, which helped me get as far as I am
today ;-) My parents bought me a terrific
birthday gift which helps me with a lot of doings
in the house- a cart with wheels- I can fold
laundry and push it to the proper room- carry
items to the kitchen- unload the dishwasher and
place the items on there until I can get the
energy to put them away- it comes in handy for
many purposes for me.
Anyhow back to
the bruising, definitely, why I refer to myself
as having * china doll syndrome * ... touch
me, I bruise... Dr jokingly said I need a
rubber body suit...
I still had one
more episode with the hospital but this time it
was for my colitis, which, upon research I found
is one of the big symptoms of EDS... now that Ive
had most of my life......... this particular
session hospitalized me once again.......... and
drs were going crazy, having people wear masks
and body covers to come in and see me and ordered
not only a pic line but also a colonscopy I guess
they refer to it as........... I had had
enough and was so worn out that I would not
consider that test which made them all very angry.........
they sent me home with a lot of potassium and
medications now for colitis along with all my EDS
medications........... I feel like a Jetson..........
LOL........... this amount of meds is breakfast,
this amount is for dinner and don’t forget
suppers and snacks... but at least I am now able
to get around my house... still not able to go up
and down steps but can care for myself in house
...........
Upon research
though- it is a good thing I did not allow the
picline or that test........... I found out that
EDS patients need to be put under to have both
done and they had intentions of just drugging me
to an extent and keeping me awake as they did it..........
Whew... Now if I have to go in again... I have
the information all printed out and will wave it
in their faces as I am better informed and will
not allow anyone to do this or anything else of
the sort to me while awake.
Also, last but
not least... it is almost impossible at this
point to have blood drawn as my veins do not
allow them to find them easily and burst when
they do find them.......... I have always been
easy to get blood tests from up until this
syndrome decided to take total control of my body...
This may be a
rare, uninformed disease but there are many
leagues which I have joined and support groups
such as this one that will help us with our fight.........
and if it doesn’t help us much at least the
next generation will have more information to use
by us putting our two cents in and watching us
fight this will give them incentive.........
God Bless and
Hugs to you all
TJ
P.S. Since
diagnosis- I think back to my childhood and
recall many signs that were there but none of the
doctors were even near suggesting it be EDS- too
many doctors in my area are totally uninformed of
it.
Severe bruising
at the drop of a hat- In phsyical education- I
was forced to play volleyball- you know where you
use your wrists to hit it- my wrists were totally
bruised and even though sent to office for ice
and bruises quite noticeable the phys ed teacher
demanded I still play- even if I had to hit the
ball a different way- which led to more bruises
of course. The doctors told me to take * Vitamin
C *.
Severe leg
cramps that would result in what the doctors
labeled * hemotoma* at the time - would last 2
weeks- bruise from heel to thigh- one time I was
pregnant and had just knelt down on my knee to
change the channel on the television when all the
sudden horrible pain struck- another *hemotoma*-
there was not much one could do as I was pregnant
.
Not long after
pregnancy- I was once again placed in hospital-
my youngest son was only 4 months at the time- I
had severe leg muscle spasms and again was
bruised from heel to thigh. A doctor gave me
quininie which did reduce the muscle spasms- he
also ran a bone density test and decided of
course that I needed fosomax- I quit taking that
on my own and will not take it- it tore my
colitis up so bad- and another doctor suggested
vein removal of both legs - did make the
appointments to have that done- seperate times
for each leg- the amount of pain after surgery
for me was horrendous to say the least and the
doctor was not sympathetic with it at all. He
told me to take tylenol - even though each time I
stood- the leg would bleed and it was not
supposed to do that that late after the surgery.
Many doctors
have diagnosed me wrong- One said I had an 80
percent blockage of my femoral artery- but
claimed it was not bad enough at that point to do
surgery- 80 percent sounds bad to me- I could
barely walk- He put me on trental and I forced
myself to walk daily- in fact- I got to where I
would hop on the treadmill and 1 hour at a time-
walk a total of 9 miles a day. This did indeed
help with the so called blockage- even to the
point of removing it?
Also colitis and
ulcers were a big factor all my life- even as a
child I had colitis symptoms- upon marriage my
colitis/ulcer became bad enough that I went to
emergency a few times- was given lomotil and
combid- forced to eat baby food for what seemed
forever- anything else just tore me apart-
needless to say- I was down to nearly 90 lbs
before I could finally eat again- with the aid of
metamucil 3 times a day along with the lomotil.
Styes- mercy-
have I had problems with those- surgery was done
on one when I was in approximately the first
grade- since then many more styes have happened.
One became big and bad enough that I was prompted
to see an eye doctor in Lapeer- not knowing he
was going to remove it right there in his office-
I was in for a huge surprise- They froze it- felt
like they pulled my eyelid back and tied it to my
ponytail- took the stye out- and left me with a
huge bruise and a patch to cover it. That wont
happen again- I assure you. I have since had
styes- but use over the counter stye medication
which seems to be doing a good job.
It is too bad
someone did not diagnose this when I was younger-
all the signs were there. Perhaps it could have
prevented my sons death - the doctor he had at
that time may have done surgery quicker had he
known EDS was in the family. But even I had no
idea-
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Made- November 13, 2003
Last
Revised ~ December 29th , 2004
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