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What Is Ehlers-Danlos Syndrome (EDS)?

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Ehlers-Danlos Syndrome

EDS is short for Ehlers-Danlos Syndrome from the two doctors who first really identified the condition many years back. There are a number of variants but the most common is extreme joint hypermobility. Other common identifiers include extremely stretchy skin, slow wound healing, cigarette paper scarring, skin and tissue fragility.

Of the six types of Ehlers-Danlos Syndrome, five are diagnosed using biochemical genetic testing as well as family history and presenting symptoms. Only the Hypermobile type of EDS does not have a specific test. Diagnosis of this type is made based on family history and the Beighton Scale of Joint Hypermobility. How stretchy is the skin? How hypermobile are the joints? That kind of thing. As an example, my own thumbs can extend backward to a full 90 degrees. My knees can bend backward by 37 degrees. I know people who can bend their fingers backward far enough to touch their wrists. And yes, I do mean backwards. There is no proof, but it is almost certain that Houdini had it because of the way he was able to dislocate his joints at will to get out of his various escape proof contraptions.

I am personally fortunate that my own EDS is mild. That's not to say I don't have annoying and painful symptoms. There isn't a day in my life that I don't wake up with one or both hands numb and tingly because my shoulders subluxed during the night. But my EDS is at least manageable without multiple surgeries and 24/7 pain meds to cope with daily living like most of those I work with. Multiple surgeries? Thirty or forty in a lifetime is common for the more severe cases. I personally know two people who have each had over 100 and they were all considered major surgeries. I read a post on CEDA not two hours ago where the individual was discussing her 6th – in just the last year alone.

It is a misunderstood and commonly undiagnosed or misdiagnosed condition. The only exposure that the vast majority of doctors ever have with it is a sentence or two in one of their text books while in medical school. They don't understand it. They don't know how to treat it. And they persist in insulting someone who lives with it every day of their life by telling them their pain is just in their heads.

How would you like to grow up being told by your teachers that you were dumb or slow because you could only complete half the math test in the allotted time, only to find out 10 or 20 years later that the real problem was your fingers were so unstable that you couldn't grip the pencil without pain? That's what my daughter experienced. Or being told you were lazy because you couldn't handle gym class when in fact the activities were causing you to have spontaneous hip or shoulder dislocations? I must read at least one new example of this kind of nonsense a week on CEDA. And this is TYPICAL. It is not the exception. It is the norm.

When I first became active with the support group, it was believed that EDS was relatively rare, affecting maybe one in every 5000 people. The percentages have dramatically changed in the last few years. I think the last time I saw any official stats they had changed it to one in 500. The reality is that any time I am in a room with 40-50 other people who have never even heard of it, and the subject comes up, I find that at least 2 either have identifiable indicators themselves or know people who do. It is not as rare as commonly believed.

Any time you see a contortionist or other extremely flexible individual, you can just about bet that they have EDS. Double-jointed? Same thing. The problem in many, many cases is that the extreme flexibility growing up is viewed either as a "neat party trick" (look what I can do) or as an asset for certain activities like gymnastics or ballet. And none of them, the kid, the parents or the coach has a clue about the long term damage being done to the child's body.

In one half of a small nut shell, that's EDS. And in the other half, that's what drives me. It's why I do what I do - trying to find something, anything, that can help. Didn't mean to preach, but when you realize that it was through my learning massage and bodywork that my daughter was able to consign her wheelchair to the garage to gather dust, I think you can appreciate that this is a very emotional subject for me.

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