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Old 03-14-2011, 10:19 PM
 
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Does anyone know what this syndorme is? Do you know anyone who has it?
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Old 03-15-2011, 07:29 AM
 
Location: In a house
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It's spelled Ehlers Danlose - you can find a bunch in a google search about it. I have it, but it's not very severe with me as it is with the people you'll read about on the internet. Those tend to be the most severe, and that kind of severety is rare.

Basically, EDS it a connective tissue and collagen disorder, passed down genetically. Something happens in the connective tissue when collagen is produced, and the collagen gets sent to all the wrong places. So you end up with "hypermobility" - which is commonly known as being double-jointed. Superelastic skin - such as the rubber band effect, and various other similar oddities.

People who have it in its most severe form have difficulty with their bones breaking, because they can't control how far back their joints go when they bend them. My elbows are hypermobile but I never lost control over them. I did have trouble when I was a kid playing viola, because my ring finger would get stuck in position when I held the bow and I'd have trouble unsticking it for awhile.

The superelastic skin can actually be a blessing; at 49 years of age, I don't have any wrinkles yet and my facial skin is very supple and soft.

Some of the more severe symptoms known about involve the digestive and cardiovascular systems. There's no cure for it, it isn't a disease, and the only thing you can "do" about it is support the affected areas with treatments of the symptoms.
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Old 03-15-2011, 06:15 PM
 
Location: state of procrastination
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Originally Posted by AnonChick View Post
It's spelled Ehlers Danlose -
I am most used to seeing it as Ehlers-Danlos without the extra e.... But good description. People who have the type affecting blood vessels can potentially develop aneurysms of their blood vessels so they have to get checked periodically.
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Old 02-20-2012, 12:06 AM
 
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I'm going to a geneticist Tuesday for testing for EDS type 4 (vascular type). From what I have researched its a rare connective tissue disease that is usually genetic but isnt always. Theres 10 types in all but 6 main types (the other 4 are so rare they only have been documented in a few families). It usually onsets at about age 20 and it has many different symptoms from: easy bruising, double jointedness, hypermobility, skin elasticity, fragile skin, easily broken/dislocated/sublocated bones, chronic pain, fatigue and the list goes on. From my research with the vascular type I found that its the most severe and there can be many complications from possible ruptures of the organs/ anurisms/ and a life expectancy of 48 yrs. I was diagnosed with severe Fibromyalgia and seizure disorder a year ago (at 20 years old) after 2 1/2 yrs of drs not knowing what was wrong. EDS can be present as well as fibromyalgia or EDS is very commonly misdiagnosed as Fibromyalgia/Lupus/MS (as well as a few other autoimmune diseases). There is no cure, the only thing that can be done is treating the symptoms and keeping up with dr appointments to make sure everything is ok. I'm double jointed but I've never dislocated anything but I do have severe issues with my joints and muscles. The problem is that alot of doctors have never even heard of EDS so it often goes undiagnosed or misdiagnosed. I'll be driving 2 hours to my appointment lol Hopefully I come back with good news!
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Old 02-20-2012, 07:39 AM
 
Location: In a house
13,263 posts, read 32,182,843 times
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EDS is genetic. Each type "runs true" in the families that pass it down. So if you have type II, your kid won't come down with type III. It's like eye color. Maybe you have blue eyes, and your husband has green eyes. But somewhere in the familes, someone had the dominant brown, and your kid got it too. Onset occurs randomly, because it's part of your genetic makeup. Some people never show any symptoms of it at all - but they still have it. Some people will have symptoms and never recognize them as such - like my family thinking I just had really good skin, until I went to the doctor for an unrelated problem and he recognized the collection of symptoms and checked further.

It's often first evident in the growing years, during childhood, when bones are growing and skin is stretching around the skeleton. But again, sometimes you can have it and never show any symptoms, and live your entire life not realizing you had it at all. Until your child shows symptoms and you realize your aunt had hammer-toes and your second cousin was double-jointed. That's when you realize you had the genetic pattern for it all along.
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