Ehlers-Danlos syndrome (EDS) community

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

The long road to the diagnosis of my illness ... by Valy73 published 29 days 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...

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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...

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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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Every lost battle will only make me stronger! by Carolina published about 1 month ago

In the northern part of Europe, in the very north of Sweden, in a small town called Luleå you can find me – Carolina. I'm 43 years old, married and a mum to a 13-year old boy named Calle. Both of us, Calle and me, suffer from the Ehlers-Danlos syndrome, the hypermobile type. Luckily, and so far, my son doesn't experience as many problems from his disorder as I do! When I was born, in ...

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Patient groups

  • EDS Sweden

  • AFSED France

  • Ehlers-Danlos National Foundation

More information about these groups

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Ehlers-Danlos syndrome (EDS) Recent Activity

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    Welcome message from the Swedish EDS forum moderator
    topic, published 2 days ago

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    Welcome everyone!

    I am Monica, one of the moderators for this EDS forum. I do hope you will join us in order to share your knowledge and experiences across language barriers! I want to take a moment and introduce myself, and also give a few reasons for us in the Swedish EDS association joining...

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    Greetings from Ohio
    topic, published 3 days ago

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    Just a floppy type III and her even more flexible daughter saying hi from the US... because of her diagnosis, I recently learned that it's not normal for me to be able to put my feet on my head at age 48.... Looking for friends and compatriots, as well as my ankle... I know it was around here so...

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    Raising awareness about EDS!
    topic, published 7 days ago

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    Hello fellow EDS sufferers. I am trying to raise awareness about EDS and other invisible conditions. Such little is known about EDS in the United Kingdom that many people with the condition have to travel to London for the necessary treatment.

    I have created an invisible disability blog, calle...

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    Manifestations of Heritable Disorders of Connective Tissue
    news, published 12 days ago

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    This study is currently recruiting participants.

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    EDS school in Lyon: the PrEduSED
    topic, published 24 days ago

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    A project just for you, hypermobile EDS sufferers
    2nd session of the Patient Therapeutic Education program - PrEduSED©
    On 29-30-31 March and 01 April 2012
    at the 'Centre Médico Chirurgical et de Réadaptation des Massues' of Lyon organised by the AFSED, 'Association Française des Syndromes d'Ehler...

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    Bienvenue
    topic, published 26 days ago

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    Welcome and what a pleasure to be in touch via this website, we will be able to share our experiences and all our treasures of energy, and more importantly, if some of us travel, we will have the opportunity to meet in real life!!!

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    Hello,
    topic, published about 1 month ago

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    I am very happy and honored to be with AFSED (French Association for EDS) at the origin of this project. Thanks to the effectiveness of Robert and to all patient groups that have agreed to participate.

    Welcome to all!

    Feel free to contact us, ask questions, and share your experiences and ...

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    EDS 2012 Conference Announcement
    document, published about 1 month ago

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    Sept. 8-11, 2012 in Ghent, Belgium

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    Welcome & thanks for coming to the EDS community!
    topic, published about 1 month ago

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    My name is Allie and I work for NORD- The National Organization for Rare Disorders. I am Rob's US counterpart and work on managing these communities.

    If you have any questions please do not hesitate to contact me at [email protected]

    Please share your story in the What? section. ...

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    Welcome to the EDS Community
    topic, published about 1 month ago

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    Thanks for registering. My name is Rob and I work with EURORDIS on the RareConnect: Rare Disease Communities project.

    This forum space is fully translatable across all the website's 5 languages. If you see a post in a language you don't understand, click on ASK FOR IT, to have that translation...