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My name is Susan and I have a somewhat rare, genetic disorder of the connective tissue system called Ehlers-Danlos Syndrome (EDS). Actually, more like a family of connective tissue disorders, EDS affects people in different ways. The disorder itself is not curable or really even treatable at this time, but the secondary effects that occur are often devastating and needing strong medical interventions.
One of my complications is called Functional Cranial Settling (FCS). Because I have lost so much connective tissue between my head and neck, my head keeps falling down so that my spine presses into my brain. This is definitely not cool and I already had one very big surgery in 2013 to stabilize things, but it is getting bad again. For now, I am pretty much bedridden and, when I do leave the house for doctor's appointment, it is in a supine power wheelchair. I will be consulting with my neurosurgeon in NY in about a week and am hopeful he has a revision procedure to offer me.