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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.

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Pouring you a cup of coffee and gently shoving a footstool your way-

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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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Page Made- November 13, 2003

Last Revised ~ December 29th , 2004