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| The zebra is the mascot for EDS because medical professionals are often taught, when you hear hoofbeats, think horse not zebra. But people with EDS are zebras. Image courtesy of Wikimedia commons |
After a lifetime of knowing something wasn’t quite right
with my body, a geneticist recently diagnosed me with Ehlers-Danlos Syndrome, a
genetic connective tissue disease, which affects all the body’s organs and
tissues causing deterioration and degeneration. The subtype I have is characterized
by pain and exhaustion. (Honestly, I don’t remember a time I wasn’t fighting pain
or exhaustion—I thought it was normal. I told myself, “Suck it up, Buttercup.”)
Without going into the nitty-gritty, the geneticist explained my condition this
way: Imagine your body is a house built with nails that are soft. It’s not too
bad at first. But over time, the nails fail. The shingles and siding blow off. The
wallboard falls down, and the floors come apart. And, the 2 X 4s holding the structure
together start to separate from each other.
(Not the most encouraging metaphor…)
There is no treatment for EDS. The only thing doctors can do
is treat the symptoms. Because my house is in its fifth decade, a lot of things
are falling apart (spine, joints, eyes, digestive system, circulatory system, etc.). But I
am thankful. After 53 years, it’s nice to know why.
