Survey Results: Vascular Type
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:
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Arterial rupture
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Intestinal rupture
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Uterine rupture during pregnancy
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Family history of the vascular type of EDS
Minor:
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Thin, translucent skin (especially notable on the chest/abdomen)
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Easy bruising
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Characteristic facial appearance (thin lips and philthrum, small chin, thin nose, large eyes)
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Acrogeria (an aged appearance to the extremities, particularly the hands)
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Hypermobility of small joints
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Tendon/muscle rupture
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Early-onset varicose veins
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Arteriovenous carotid-cavernous sinus fistula
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Pneumothorax/pneumohemothorax
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Chronic joint subluxations/dislocations
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Congenital dislocation of the hips
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Clubfoot
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Gingival recession
Comments
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[...] EDS Alert Newsletter Blogging About Ehlers-Danlos Syndrome « Medical: Research at Johns’ Hopkins Offers Hope for EDS Blog: Survey Results: Vascular Type March 18, 2011 Survey Results: Vascular Type « Coming Unglued. [...]
Debbie–thanks so much for your great blog. It must be so much work. I really appreciate it!
I am especially interested in your survey data and I feel bad that I’m not participating. Forgive me for asking a dumb question, but where should I go to take it?
Thanks?
Heidi
Heidi – No worries! I love the idea that there are more people “out there” who can still offer their experiences to the rest of us.
The link to take the survey is: http://www.surveymonkey.com/s/YTF337T
It’s completely anonymous and only 10 questions – let me know if you have any problems with it! Thanks for your input – I really appreciate it!
i was wanting to know more on this disease. i was told about 12 yrs ago that i had a lack of collagen in between my shoulder bones and that was the cause of my arms popping in and out of place. i am not really sure of anything because they took xray after xray trying to find out what was causing the problem and when nothing showed up they said nothing was wrong and sent me back home. its little things that can make my arms pop out bending them a certain way or even sleeping wrong can cause them to come out of socket.
Thanks for writing -
All types of EDS are caused by a lack of collagen – but it can be hard to distinguish between the types of EDS b/c there’s a lot of crossover in symptoms. If your arms are popping in and out, there’s definitely a very strong chance it’s due to one of the forms of EDS. X-rays will only show bone damage -if there is any – not “soft tissue” which is what controls the movements of the joints. Many people with EDS, esp. the Hypermobility type, have the problem with sleep causing their shoulders to dislocate.
Have you been seen by a geneticist? That’s the best place to go for a diagnosis – other specialites may have some familiarity with EDS, but only a trained geneticist can help decide if what you’re going through is EDS related.
I hope you’re able to find some answers soon – let me know if I can do anything to help!
Debbie
Thanks for sharing this information with the world! My daughter is 13 yrs old and was diagnosed with types 1,2, & 3 when she was 2. She is very petite…only about 4’5. A lot of her friend are 5 ft. And taller. She has not had a “growth spirt” yet and I am wondering if small stature is a common trait with EDS. I have not read it mentioned anywhere and I was wondering if you could help me. Thank you in advance!
Hi Jennifer,
It’s hard to say about the smaller stature; I have read in some clinical papers that shorter stature for VEDS patients can be a trait, but I haven’t seen it defined as a symptom by the doctors who are considered experts in VEDS. As to the other types of EDS, I can’t really say for sure. There is a very thorough description of each type on the National Institutes of Health site – I think I have links posted from this blog following each type’s description. (At least I intended to!)
Good luck with your search – btw – I am very petite; fully grown and barely over 5′. I don’t have any type of EDS – just lucky I guess. I always joke that my brother and sister (both much taller) got the legs in the family, but I got the brains! Tell your daughter to hang in there – good things come in small packages!
Hi,
I’m expecting and since I’ve had 4 premature births, a deceased father who had several aortic, abdominal and iliac ruptures and a son with dilated vessels in his cerebellum and behind the eyes the geneticists tested by blood for vascular ehlers-danlos. It came back that my genes are mutated (AAA to AGA). She says that means I have it but I have no major signs that I do. Have you heard of results being wrong or should I ask for a skin biopsy? No other family members have any issues other than nose bleeds and my dad had calcified arteries and kidney failure since age 13. Thanks for your time. I’m confused about family inheritance and because the doctors are wanting me to abort since there is no record of a woman being pregnant 6 times with this and leaving past 2nd or 3rd delivery.
Dear Author,
I am a 33 year old man that suffers vEDS and people seriously under estimate the amount of pain involved. I don’t understand how tendon and muscle rupture could be considered minor. Also I have had 4 Pneumothoraxs and don’t characterize them as minor. I have tore my muscle in my legs. The problems with the lining of the gastro-system are even worse. They leave esophagus,stomach, and intestines with a fragile lining susceptible to tearing. In women it is different they have and extra organ. Joints hurt so much especially knees and ankles. The lower back is also a problem. I just thought I would write after reading this article.Hope someone reads this , John