Coming Unglued

First Results from EDS Survey

Posted on April 28, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Research Information, Symptoms of Ehlers-Danlos syndrome | Tags: EDS, EDS Network C.A.R.E.S., Ehlers-danlos syndrome, HEDS, KEDS, Research, Support & Friendship, VEDS |

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 %

Hypermobility  46.4%

Vascular  24.1%

Kyphoscoliotic  1.4%

Arthrocalasia  0.5%

Tenascin-X Deficient 0%

Dermatosparaxis 0%

Type not specified 9.5%

 

Symptoms:

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 %      

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