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[–] ebola1025 0 points 2 points (+2|-0) ago 

My sister has been tentatively diagnosed with this and I have a close friend with it as well. I don't know which subtype they've been diagnosed with, but it has made things painful for both of them. My sister and her doctors thought she had fibromyalgia until she got in a car crash, needed a ct scan, and they found whatever the typical abnormality at the juncture of the skull and vertebrae is--I think there's a position or an extrusion of the bottom part of the brain near the spinal opening? I can't remember now. Ehlers-Danlos was what they said preliminarily following the ct scan. My question is twofold: the first is, have your doctors recommended an exercise regimen? The reason I ask that is because if your muscles and bones are weakening, are they trying to counteract it. Also, do you find that the way you look, your "body type," shares characteristics with other E-dan patients? My sister and my friend both have long thin limbs and necks.

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[–] FPHrefugee [S] 0 points 2 points (+2|-0) ago 

The formation you are talking about is called Chiari malformation, a common comorbid condition. Yes I'm doing physical therapy, water/pool therapy mostly though got approval just recently to do small amounts of stationary recumbent biking. Mostly limited motion, resistance to build muscle slightly. So not cardio but slow and concentrated movement. Oh and vitamin D

I have the giraffe neck! Now if only I had the thin nose too..I hate my nose (random thought sorry!)

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[–] ebola1025 0 points 0 points (+0|-0) ago 

Wow, that's unbelievable. And that's really, really interesting about the long neck. Have you been told that the long neck is also a characteristic? My sister is not affected as significantly as you, especially physically, so this was really interesting. I have another question: what is the prognosis and specifically what health problems will you be more prone to as you age?

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[–] Kleyno 0 points 2 points (+2|-0) ago 

What is it? I am too lazy to search.

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[–] FPHrefugee [S] 0 points 1 points (+1|-0) ago 

It's a disorder that affects collagen. Collagen is a building block of around 70% of our tissues. Mine isn't produced right, it's different.
So I'm more at risk for organ rupture, aortic dilation, scars that are indented instead of raised. It affects blood vessels, skin, bones, tendons. I'm hypermobile so I'm very flexible, but it causes pain because it causes my joints to dislocate from doing pretty much nothing. Even big ones like my hip. My skin tears easy, but is very soft. I take longer to heal. My veins don't contract right when I stand so I pass out after standing, so I use a wheelchair. My bones are thinning faster. My tendons and ligaments can tear easy. I bleed more. I bruise a ton. It also causes digestive issues (stretchy tissue in stomach and colon cause a lot of issues).

There are three main types (and quite a few lesser known ones), Hypermobile, Classical, and Vascular. I have classical with overlaps into the other two. Vascular is the most severe, classical next, then hypermobile.

It is a genetic disorder. There is no cure. It usually has a 50/50 chance of passing it on to a child if you have it.