domingo, 4 de marzo de 2012

Ehlers-Danlos syndrome , the Community - Rare Disease Communities

Ehlers-Danlos syndrome , the Community - Rare Disease Communities


Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder characterized by joint hypermobility, skin hyper extensibility and abnormal wound healing.

my life by lauren published 13 days ago

hi my name is lauren walsh i am 21 years old i have ehler danlos, osteoporosis, raynauds , hyperglycemia and chronic acid reflux and gastroparesis. i also have zero bowel function and have a bowel pacemaker in place

The long road to the diagnosis of my illness ... by Valy73 published about 1 month ago

It took 30 years ... I remember many times, when I was young, my legs became folded on the sides and I was unable to get up by myself .... "Mom, hurry, my knees have dislocated!! ".
The years passed but no the worries ... until I sometimes found myself daily on the floor, my knees having "collapsed" under me with severe pain!
I ended up in the emergency room, with a knee...

The correct diagnosis was a turning point by Karin_L published about 1 month ago

Our daughter showed symptoms of EDS at a very early age. At 6 months she started crying at night which the pediatrician diagnosed as colic. In her case the pain never went away and at 14 months she indicated that the problem was in her legs, not in her stomach. That was when we started the long, frustrating and exhausting process of finding the correct diagnosis which took us through many parts...

A Swedish dancer with EDS by Charlotte published about 1 month ago

Photo by Michael Baumgarten As a young dancer I had several injuries and realized I needed to learn more about my body, and how to use it in dance, in order to fulfill my dream of dancing. In 1975, 19 years old, I started Pilates training. As an adult, and as a teacher and physical therapist, I realize how much of a foundation that gave me for life. I now teach Pilates to dancers, to people wit...

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