Survey Results: Vascular Type

Posted on May 7, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Research Information, Symptoms of Ehlers-Danlos syndrome | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |

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. 

Symptoms Percentage #
Family history of EDS 50.00% 30
Premature birth 41.70% 25
Clubbed foot 11.70%   7
Hyperelastic (stretchy) skin 18.30% 11
Thin, translucent skin 75.00% 45
Large or prominent round eyes 60.00% 36
Lobeless ears 53.30% 32
Sleep with eyes half-opened 58.30% 35
Flat footed 55.00% 33
Visible veins (part of translucent skin) 75.00% 45
Easy bruising 85.00% 51
Atrophic scarring 31.70% 19
Hip dysplasia 3.30%   2
Scoliosis 21.70% 13
Positive Beighton scale 16.70% 10
Hypermobility of large joints 30.00% 18
Hypermobility of small joints 48.30% 29
Arthritis 35.00% 21
Inguinal hernias 15.00%   9
Umbilical hernias 10.00%   6
Frequent nosebleeds 20.00% 12
Reynauds syndrome 30.00% 18
Numbness/tingling in extremities 33.30% 20
Migraines 45.00% 27
Chronic constipation 26.70% 16
Aneurysm or arterial complication 63.30% 38
Bowel perforation 23.30% 14

 

Important Note!!

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:

Major:

  • Arterial rupture
  • Intestinal rupture
  • Uterine rupture during pregnancy
  • Family history of the vascular type of EDS

Minor:

  • Thin, translucent skin (especially notable on the chest/abdomen)
  • Easy bruising
  • 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
  • Tendon/muscle rupture
  • Early-onset varicose veins
  • Arteriovenous carotid-cavernous sinus fistula
  • Pneumothorax/pneumohemothorax
  • Chronic joint subluxations/dislocations
  • Congenital dislocation of the hips
  • Clubfoot
  • Gingival recession
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