Today is Rare Disease Day! "No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” Professor Rodney Grahame EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know. Dysautonomia is a umbrella term dysfunction of the autonomic nervous system. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. I have a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside. “It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”
