Wednesday, June 30, 2010

EDS Today in the Chase Community Giving Challenge

I know this blog is about my dolls but I'm taking a time out to talk about something that's important to me and a lot of my friends.

I have Ehlers-Danlos Syndrome which is a rare collagen production disorder which is also genetic. It causes many things...for me it's caused my joints to dislocate, my skin to tear, my blood vessels and organs to malfunction and potentially rupture and for my vision to become severely impaired.

I can no longer function without the help of crutches, three finger splitns, two wrist braces, two knee braces, two ankle braces and tons of auxilary visual and computer equipment.

There is very little research on EDS and there is no standard treatment and no cure. I have been the CT State Captain of EDS Network CARES ( for a few months now. EDSNC won in the last Giving Challenge on FB and now we've partnered with another research organization called EDS Today. The money will go towards further developing two studies that are currently under way, one of which I may be participating in myself.

Please click on this button: and follow the instructions to vote. Your vote could help save many lives, including MINE.

♥ Thank you.

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