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Ehlers Danlos? (with pictures)
by jaaake, Jun 11, 2009 02:50PM
Is there a chance I have vascular ehlers danlos syndrome?
I have very elastic skin. If I sit for more than 5-10 mins, my knees feel loose and unsteady, I have to shake my knees about to jiggle them into place, then they make a popping sound. If I dont go this, and flex my knees, they crunch and pop.
When I get stresssed, I get little red spots under the skin, particularly on the inside of my arms, that doesn't fade when a glass is pressed.
I also have spidery purple blood vessels visible on the tops of my shoulders.
The pics show the elasticity and flexibility: http://picasaweb.google.com/JonnyFear/IMAStarfish?authkey=Gv1sRgCMLc9-rT9svcrwE&feat=directlink
I am particularly worried because of the blood vessel things, I don't want vascular EDS.
I have very elastic skin. If I sit for more than 5-10 mins, my knees feel loose and unsteady, I have to shake my knees about to jiggle them into place, then they make a popping sound. If I dont go this, and flex my knees, they crunch and pop.
When I get stresssed, I get little red spots under the skin, particularly on the inside of my arms, that doesn't fade when a glass is pressed.
I also have spidery purple blood vessels visible on the tops of my shoulders.
The pics show the elasticity and flexibility: http://picasaweb.google.com/JonnyFear/IMAStarfish?authkey=Gv1sRgCMLc9-rT9svcrwE&feat=directlink
I am particularly worried because of the blood vessel things, I don't want vascular EDS.
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My daughter has a connective tissue disorder that has yet to be diagnosed. She also has Chiari malformation and Tethered Cord which are common in EDS patients.
She can bend her thumb to her forearm, and a few of the things you showed in the pics. However, her skin is not as stretchy as yours, though. Is your skin velvety??
She is scheduled to see a geneticist very soon.
I hope you don't have this, but if you do, find a good geneticist. I know of a good one in Maryland if you are nearby.
Blessings,
Rebecca