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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14 Responses to “Survey Results: Vascular Type”

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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.

[…] 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. […]

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

John,

It’s been a while since I have checked messages on this blog – so I apologize for not answering sooner. You are 100% right – people do seriously underestimate how much pain is involved in this disorder! One reason is that it is an “invisible” disorder, meaning on the outside it’s possible to look completely normal, and function almost normally. But what isn’t visible, is the amount of pain and damage that can be happening to the body just to be able to “function normally.” Almost everyone I know who lives with this disease goes through exactly what you’re describing in terms of being very misunderstood by the people around them. I hope you have some support in your life to help you through those frustrating times. Take care.

~ Debbie

I was just diagnosed with Hypermobility EDS, but I have many of the minor criteria for Vascular EDS. I have not had any kind of rupture yet – but my symptoms are getting worse quickly. Is it possible to have VEDS and just not experienced a rupture yet?

Hi Elizabeth,

It is very common for the symptoms of the different types of Ehlers-Danlos to “cross-over”; in fact, that is a contributing factor to the problem of misdiagnosis. As far as your specific situation, I can answer in two parts. It is possible to have VEDS without experiencing a rupture – there are people in their sixties who have had no major vascular event and only know they have it because of other family members who were tested. For you though, it’s important to consider which type of doctor made your diagnosis and how it was made. If you’d like to email me offline at debdossjones@gmail.com and give me a little more background on the family history and events that led to the diagnosis, I can possibly be more helpful. Either way – the frustration and fear you’re experiencing is very normal, so hang in there! ~ Debbie V.

Thanks, Debbie. I emailed you. Let me know if you have not received it.

I was just curious if cleft palates were common with this as well? I was born with a cleft palate and also have EDS – hypermobility/classic. I was thinking that if EDS effects tissue then cleft palate would make sense, but haven’t seen it mentioned here or on other websites.


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