Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.
Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.
I went into the whatever-we-call-a-flare-in-a-disorder-that-isn’t-technically-autoimmune this week. It started with a week of persistently low diastolic blood pressure (in the 40s/50s), while the systolic stayed high enough to just confuse me. Am I supposed to do anything when the diastolic is really low, but the systolic is okay and I’m not really fainting? I’m still unclear on that. Anyone else with dysautonomia have any advice?
I didn’t do anything about it, so when I woke up with intermittent double vision about a week ago, I just assumed it was some new fun symptom of dysautonomia. Or, maybe it was a new migraine aura. I’ve had classic migraine aura, and the movie version of Beowulf will forever stand out in my mind not just because it was horrible but also because it had a blue neon strobe light scene that so perfectly mimicked my then migraine aura presentation that it triggered my one true grand mal seizure of my life. But, for the past few years, my aura has been more like a greying and blurriness, especially around the periphery. Double vision, while lousy, seemed sadly within the realm of ways my body could torture itself.
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