Symptoms of Ehlers-Danlos syndrome

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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First Results from EDS Survey

Posted on April 28, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Research Information, Symptoms of Ehlers-Danlos syndrome | Tags: , , , , , , , |

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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TAD Coalition – The Ritter Rules

Posted on March 29, 2010. Filed under: Awareness, Ehlers-danlos syndrome, Related Disorders, Symptoms of Ehlers-Danlos syndrome, Treatment | Tags: , , , , , , , |

Actor John Ritter

Named for actor John Ritter, who died from an aortic dissection, the Ritter Rules offer practical guidelines for patients to equip themselves with and increase their chances of accurate diagnosis and treatment.  There are many diseases and risk factors at work, just one of which is Vascular Ehlers-Danlos Syndrome, but other genetic syndromes and lifestyle issues also put people at risk. 

Take a few minutes to go over these; share them with friends and family.  So many of these deaths are preventable but without the right information, survival is a lot less likely. 

My husband died from an abdominal aortic aneurysm but also suffered other arterial dissections and complications that weren’t diagnosed early because his symptoms were misread.  Inform yourself and the people you love so that you’ll never find yourself in that awful situation. 

TAD Coalition.

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