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