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.

my life by lauren published 3 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

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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...

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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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Ehlers-Danlos syndrome (EDS) Recent Activity

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    Interview with Kate Cross and Byron the dog!
    topic, published 3 days ago

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    If you live in the UK you will most likely have heard of Kate Cross in the news recently who suffers with Ehlers Danlos Syndrome and has Byron the dog to help her with day to day tasks. If you haven't please check out the link to the article and video below.

    What Byron and Kate are doing is am...

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    Welcome message from the Swedish EDS forum moderator
    topic, published 5 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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    Knees giving out
    topic, published 7 days ago

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    My daughter was diagnosed just over a year ago with type III EDS. We are trying to strengthen her core, but keep having setbacks. Now her knees keep giving out on her. She takes Gabapentin 3x daily, meds for sleep, was taking Tramadol and Ketoralac for pain but they don't help. We have immobi...

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    Greetings from Ohio
    topic, published 13 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 16 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 22 days ago

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    This study is currently recruiting participants.

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    EDS school in Lyon: the PrEduSED
    topic, published about 1 month 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 about 1 month 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