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Hoofbeats: Is It A Horse Or Zebra?
When you hear hoofbeats the first thing you think about is a horse. Horses are common, so it makes sense, but many other animals have hooves too. In the chronic illness community there are a few illnesses that the members of refer to themselves as zebras. It makes sense, the doctor hears hooves, and assumes the most common thing, ignoring the fact that there are other options, and it may indeed be a zebra.
One of these communities involves people who have Ehlers-Danlos Syndrome. It looks like a lot of things, it could be anything, it often goes undiagnosed or misdiagnosed. I was misdiagnosed for the better part of 5 years, they swore up and down I had lyme. My kiddo (Bit) on the other hand, we caught her right off.
For those of you who don’t know Ehlers-Danlos Syndrome (EDS)is a collagen disorder, it is genetic. There are many types (there used to be 10, and now they have them classed differently). Back in the 90’s when I got sick the testing was mediocre at best, so it took many hospitals and many tests to finally figure it out, and in the end I was mis-typed. I had dislocating joints for no reason, I fell a lot, my blood pressure was low, I had mitral valve prolapse, I had a host of other issues. My immune system was awful, I got random hives all the time. I was a mess. Thankfully I was never dismissed as it being all in my head, like so many are, but I…
