Zebra?

Ehlers Danlos Syndrome (EDS) is a connective tissue disorder.  People like me, who have EDS, have “defective” collagen, and as collagen is the glue that holds the body together, this can cause all sorts of problems!!!

Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.

Skin: soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

(from Ehlers Danlos National Foundation America)

So, that seems simple enough right?

Wrong!!!

Doctors are taught to look for the simplest explanation.

When you hear hoof beats, look for horses, not zebras!

Well, that is all well and good – unless you actually ARE a zebra!!!  People with EDS are quite often misdiagnosed with all manner of “simple explanations” before they finally find the jackpot – a correct diagnosis of EDS.  Usually there is also a fair whack of “you are making it up” and “it is all in your head” and “you are just looking for drugs and I am not giving them to you” type crap as well!  Of course, it also doesn’t help that EDS is so rare, that most medical professionals haven’t heard of it, or if they have, then they only know the bare basics of Vascular EDS (and immediately assume those of us without heart problems are telling porkies).

So the EDS community has banded together, and made the Zebra our symbol of recognition.  Recognition of the pain we endure from our illness, and the pain we endure trying to find our way through a sometimes impenetrable medical maze.

For more information:

Myths and Facts of Ehlers Danlos Syndrome

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