And now I will guide you through an imaginative scenario. Close your eyes. Okay, actually open your eyes because you have to read the rest of this. Imagine you are standing on a path and have your eyes closed. You start to hear hoofbeats running along the path. When you open your eyes, what do you see?
My best bet is you imagined a horse standing in front of you. Why is that? No, I'm not a mind reader (I wish). This is likely due to the fact that a horse is the most common cause of hoofbeats. Would you believe me if I said it was a zebra running along that path?
There is a well-known phrase amongst medical professionals, and/or Grey's Anatomy fans, that when you hear hoofbeats, think horses not zebras.
A horse signifies the most likely scenario, or in a medical example, the common diagnosis. If a patient came in with a cough, you wouldn't diagnose them with cystic fibrosis. First, you would rule out a more likely cause, like a cold, strep, bronchitis, the flu, etc.
EDS is a zebra. People with EDS have adopted the zebra as their emblem because most people get diagnosed as horses before finally being told they are a zebra.
I would like to take this moment to point out: no people are not actually being told they are a four legged creature with a mane and tail. I'm just being metaphorical.
In my personal experience, I started having (what I now know was EDS) symptoms around the age of 12. From what I remember, the earliest symptom that I went and saw a doctor for was shoulder pain on my right side. This pain alone would not have been enough to start a work up for EDS.
However, there were signifiers that were missed that could have helped lead to an EDS diagnosis. At that time, I was hypermobile in multiple joints, had stretchy/soft skin, severe winging scapulas, and was always decked out in bruises. Not only that, but more importantly, I had a mom with a history of joint pain, tears, joint surgery, stretchy skin, etc. (Remember EDS is a heritable disorder🧐).
After countless doctor visits throughout the years, I wasn't officially diagnosed with EDS till I was 26. I can't even remember the amount of times I was told I was a horse. Those stories will come soon.
With all this in mind, I don't blame the doctors that misdiagnosed me. Education on EDS is not very common, and the disorder itself is fairly rare. Though I wish I could have understood my symptoms earlier in my life, there is nothing I can do now but become a well-educated zebra.
Be Brave. Stay Kind. Much Love.
Sami
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