Zebras and EDS

I don’t know if anyone else has noticed, but many support groups use an animal or plant as a sort of “mascot” for their condition. An animal (or plant) that is “normal” and often beautiful and perfect in it’s own right. I get that! For example butterflies are deaf but that’s the way they are made, so it’s a lovely “mascot” for deaf people.

For EDS it turns out that we are Zebras! Many of you will know that I LOVE zebras, and have used black and white stripes in much of my art, I wear a bit of it (in glasses, accessories etc), from an artistic perspective I feel that it so well offsets my bright colours, and the bright colours make the black and white feel crisp and clean to me! I also have many throw rugs and cushions in Zebra stripes, and waaaay too many zebra quilting fabrics! I use them in all the African themed quilts that I make, and many of the Christmas decorations that I make too. I also love photographing zebras and have waaay too many of those too 😛

So when I joined a major EDS support group, I was not expecting that they would have an animal to represent them, but I was pleasantly surprised that they do, and that we are referred to as Zebras! But why a Zebra you ask? For two reasons:

ONE: The first reason is that EDS is so often missed, mainly because it is a relatively hidden condition, and as we sprain and dislocate our joints, they are treated as an individual (and often stupid or “terrible bad luck”) injury, and always as a result of falling, twisting, whatever. Doctors are (rightly and validly) trained to assume that when they hear hooves, it is a horse, not a zebra! This word picture is very common (I have now found out) in the wider community of rare or hard to pick up conditions. Sprains and the like are one of the most common injuries in even the most robust people, and stupid accidents happen ALL the time! When a patient arrives at the ER, and X-rays are done and show no breaks, and all the symptoms are there of a sprain (or even a dislocation), then appropriate treatment is advised, and the patient sent home. 99.9% of the time, it is simple and straightforward. How many times when you hear hooves do you think “oh that must be a zebra!” … the answer (unless you are my Ang LOL) is probably NEVER! If every ER doctor assumed that every single sprain or dislocation was a rare or complicated condition, then they would be wasting a HUGE amount of time, energy and money, not to mention enormous inconvenience and expense to the vast majority of their patients. So you see a sprain or dislocation (you hear hooves) it is right and valid to think normal injury (horse), even if done in a silly or awkward way) … and never to think of some crazy underlying condition (Zebra). So in the communities involving the kinds of conditions that are so easily passed by unnoticed, this analogy is often used… and I noticed that when referred to in those communities, it doesn’t need explaining…

TWO: More specifically to EDS however, is that no two patients are identical. It is exactly the same with zebras. The stripes on zebras are very much like fingerprints, each animal is unique! (and believe me, I’ve already done LOADS of looking for the past few years, and LOVE taking photos of and just looking at their stripes in the wild. The animals are all white, with black stripes, and they are all beautiful and certainly in families, there may be similarities but each animal is unique. There are about 4 kinds of EDS, (mine is Hypermobile EDS) and so there are differences in general there, but even within each group, there are HUGE variations. Apparently my hyper mobility is more pronounced in my top half than my bottom half. This is a good thing, because we need our bottom halves to hold us up! So for those with their bottom halves more affected than their top halves, they need crutches and then wheelchairs much earlier in life, and small children are often delayed in learning to crawl and then stand and then walk. Then because so much of our body is made up of connective tissues, I am SOOO thankful that in our family, our hearts are totally unaffected, whereas some have huge heart valve problems… bladder and bowel prolapses etc… so there is a set of tissues that fall under the EDS spectrum (not from bad at one end and good at the other, simply rather a list of stuff) and some have many on the list, others have some of this and a lot of that, or a little bit of everything etc. So even the four boys and I have very slightly different things. Then add to that the severity of each affected area, which differentiate us from each other, and then of course our individual experiences add to the picture. In other words I have had very basic falls and accidents that have affected one wrist, both big toes, one foot, and now the other wrist. Each accident has made that joint a part of my overall picture. My wrist did not affect my walking, but my toes and foot have!

So apparently I am a zebra, and that is why …

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PS: Not ALL doctors only listen for hooves, and so I want to make sure that those who are great at looking out for and looking after Zebras aren’t ignored!! They are VERY special doctors and nurses and care givers!! I have also heard it said that doctors in training are ACTUALLY taught to also think of Zebras, but I guess that many of them maybe forget after a while?? … they didn’t make a show like “House” for nothing, thinking about Zebras is not an every day thing!

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