What Vascular EDS Patients are Saying:
The symtoms and percentages listed below are from the informal online survey I’ve had posted for a few weeks now. These results are only for the patients who identified themselves or their loved ones as having the Vascular type of Ehlers-Danlos Syndrome.
Also, these results are changing every day as more and more people are signing on and taking the survey – what a great problem to have! So far, a total of 270 people have filled one out.
If you’ve already completed one, THANK YOU!! If you haven’t had a chance yet, please do so as soon as you’re able. The more we know and understand about ourselves, the better equipped we will be to advocate for each other and work to get the care we so desperately need.
You can also keep up with results as they come in through Facebook; Ehlers-Danlos Network C.A.R.E.S. will be posting tidbits as part of the May Awareness campaign.
And YES – I am going to post the list of symptoms for the other types including those who haven’t been able to have their type identified.
|Family history of EDS||50.00%||30|
|Hyperelastic (stretchy) skin||18.30%||11|
|Thin, translucent skin||75.00%||45|
|Large or prominent round eyes||60.00%||36|
|Sleep with eyes half-opened||58.30%||35|
|Visible veins (part of translucent skin)||75.00%||45|
|Positive Beighton scale||16.70%||10|
|Hypermobility of large joints||30.00%||18|
|Hypermobility of small joints||48.30%||29|
|Numbness/tingling in extremities||33.30%||20|
|Aneurysm or arterial complication||63.30%||38|
It’s super critical to remember that just because you may share a symptom on this list does not mean you have Vascular Ehlers-Danlos Syndrome. The official diagnostic criteria – as defined by the National Institutes of Health – is listed below:
Uterine rupture during pregnancy
Family history of the vascular type of EDS
Thin, translucent skin (especially notable on the chest/abdomen)
Characteristic facial appearance (thin lips and philthrum, small chin, thin nose, large eyes)
Acrogeria (an aged appearance to the extremities, particularly the hands)
Hypermobility of small joints
Early-onset varicose veins
Arteriovenous carotid-cavernous sinus fistula
Chronic joint subluxations/dislocations
Congenital dislocation of the hips
In early 2010, I created an online survey for patients (or their family members) to complete. The idea was to gather some basic information on ourselves as a community because the better informed we are, the more capable we are to advocate for ourselves and our loved ones.
So far, more than 220 surveys have been completed and more are coming in every day. I’m leaving the survey open in hopes that one day it will include at least 500 responses. I am trying (desperately) to figure out a more efficient way to share some of this with everyone, but for now, just a straight out post will have to do.
If you haven’t taken the survey, please go to the page titled “EDS Survey” and click the picture for the link. You can also complete one on someone else’s behalf – as long as there is only ONE survey per patient.
SO – without further delay . . . . here’s a little bit of info from what folks are saying so far.
Type of EDS:
Out of 225 completed surveys, the breakdown in types goes like this –
Classical 18.4 %
Tenascin-X Deficient 0%
Type not specified 9.5%
Remember, these reflect answers from ALL of the respondents. I’ll try to provide breakdowns on symptoms by type as soon as I can.
Family history of EDS – 46.4 %
Premature Birth – 31.5 %
Clubbed Foot – 5.4 %
Hyperelastic/stretchy skin – 50.0 %
Thin, translucent skin – 59.0 %
Large or prominent round eyes – 28.4 %
“Lobeless” ears – 19.4 %
Sleeps with eyes half-opened – 28.8 %
Flat footed – 55.4 %
Visible Veins – 71.2 %
Easy bruising 80.6 %
Atrophic scarring – 48.2 %
Hip dysplasia – 18.0 %
Scoliosis – 33.8 %
Positive Beighton scale – 54.1 %
Hypermobility – large joints – 78.4 %
Hypermobility small joints 80.6 %
Arthritis – 51.8 %
Inguinal hernias – 7.7 %
Umbilical hernias – 6.3 %
Frequent nosebleeds – 25.7 %
Reynauds syndrome – 7.3 %
Numbness/tingling in extremities – 57.7 %
Migraines – 62.6 %
Chronic constipation – 43.2 %
Aneurysm / arterial complication – 19.4 %
Bowel perforation – 5.9 %Read Full Post | Make a Comment ( 1 so far )
Surely everyone deals with piles of paper in various corners of their home; or, at least I like to think I’m not the only one. It occurred to me this morning while searching for my glasses (my cat is fond of knocking them off my nightstand) and I paused to straighten a pile of papers on the floor beside my bed, that what is not so common is the fact that in this pile of childrens’ drawings, school assignments, random phone numbers, receipts, and long forgotten bills, were several pages of articles from obscure medical journals about microbiology – regenerative medicine – procollagen synthesis – aortic aneurysms, etc.
Every morning and every night I see that stack as I step over it getting in or out of my bed, but this morning for some reason, I saw the irony of it. There on my hands and knees, near-sighted and vulnerable, I realized for the first time (at least consciously) how incredibly and starkly unfair it all is – and that somehow in the last 12 years it has become so commonplace to me that most mornings I never even notice them. For a moment I was amused at the thought- then was reminded of the injustice of it all. And then, way back against the wall I saw my glasses – good try cat, but not good enough.Read Full Post | Make a Comment ( 1 so far )