In 2017 the diagnostic criteria for Ehlers-Danlos Syndrome changed and there are now 13 defined types.  By far the most common is Hypermobile EDS (hEDS) yet this is the only form for which no gene has been identified, so The Ehlers-Danlos Society have decided to enroll 1000 patients who fulfil the 2017 criteria for hEDS in a genetic study to try and find the gene(s) responsible.  This would be a huge breakthrough not only in our understanding of hEDS but also as an aid to diagnosis.

As far as I’m aware, the study is using patients from both the USA, Europe and the UK and I am delighted to say I have been accepted as a participant 🙂  I will be travelling up to Edinburgh at the start of November for my blood draw.  It’s a 3½ hour return journey for me and there are no travel expenses, however I feel it’s too important an opportunity to miss so despite the huge effort involved I am very much looking forward to taking part.

For more information on the HEDGE study, including how to be included in the EDS global registry which is a pre-requisite to taking part in HEDGE, click here.

5 thoughts on “HEDGE Study

  1. Sarah

    Oh that’s really good news and for you too. I must admit my fuzzy brain thought you meant hedge as in a garden or farm hedges. I’m such an idiot 🤦‍♀️


  2. jjlfc7705

    Wow! I’m so pleased for you that you’ve been accepted on the study. If anything you’ll know that you’ve done the most that you could personally do to help research into this area rather than watching from the side lines. Hope the journey over to Edinburgh will be ok for you too. Good luck!! xxx

    Liked by 1 person

  3. Angie Bifano

    Thank you for this valuable information. I would qualify, live in Oregon, USA, and will follow through. Very important. Good for you angie in oregon

    Sent from Mail for Windows 10


    Liked by 1 person


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