Rare Diseases - @ChronicallyJennKacey

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"Hi!! I'm Jenn and I received my A.W.A.R.E. necklace to show my zebra stripes for several chronic illnesses. Six big conditions (EDS, POTS, MCAD, Ichthyosis Vulgaris, Raynauds, Sjogrens) and something like 42 total because special snowflake! First big condition is Ehler's Danlos Syndrome. Everyone with EDS has issues resulting from defective collagen. Think of collagen as the glue that holds your body together. When your glue isn't great then everything in your body can malfunction. Subluxations & dislocations of joints (shoulders, ribs, hips, jaw, bones in your ear), stretchy skin, heart and GI problems, blood vessel issues! It’s such a varied illness MANY of us are told it's in our head. I went undiagnosed for 37yrs. Most EDS patients have other disorders because they're all tied together. POTS is a dysautonomia that can result in passing out when you stand up. MCAD is where your body can treat anything like you're allergic to it. Auto immune conditions bringing up the rear. I have Raynaud's, circulatory issue with my hands and feet, and Sjogren's which affects my entire exocrine system! Makes me a raisin. Awareness is important. I actually figured out 5 of my big 6 diagnoses through @youtube and @instagram Other people shared their journey and I was able to connect the dots. If I can spare someone what I went through then this will all be worth it! Chronic illness is hard. Everyday. My GI tract has suffered immensely after so many years of no answers. I have dismotility of my esophagus, intestines and gastroparesis of my stomach. I have 2 feeding tubes and a port for infusions. I'm so thankful for the answers I have. But what could it be like now if 20 years ago I would have seen someone wearing a zebra striped necklace and I stopped to ask why....? Hit me up with questions!" @ChronicallyJennKacey

Rare Disease

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