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Ehlers Danlos Syndrome

Discussion in 'General Issues and Discussion Forum' started by Jorisds, May 28, 2010.

  1. Jorisds

    Jorisds Member

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    I’m trying to find some information or research result on Ehlers Danlos Syndrome (Type III being the hyper mobility type) and lower extremity (functional- or biomechanical) disorders.
    Is there someone with expertise in this specific field ?
    To my knowledge, not much has been done so far. I might be wrong.

  2. Admin2

    Admin2 Administrator Staff Member

  3. Sally Smillie

    Sally Smillie Active Member

    just off the top of my foggy head, I thought they all featured hypermobility. However, some forms have more serious internal organ tissue extensibility.

    I have a number of patients with EDS but from a pod perspective, they aren't any different to any of my other hypermobile patients (I work f/time in paeds). The only thing I see as different is that they need orthoses for the long-term - it helps reduce fatigue and provides better stability for them. I guess, in an adult population the EDS patients would be very difference compared to 'normal', but in a paeds population there isn't really.

    You might try centres that treat EDS, perhaps Great Ormond Street Hospital does? The ARC leaflet on hypermobility has a link for the hypermonbility association.

    What is is exactly that you are after? Your post is not very specific - it would help members if we knew more about what you want. I hate to state the obvious, but a quick Google will give you loads of info - the medical sites are usually pretty good places to get an overview of the types etc.

    Good luck
  4. Jorisds

    Jorisds Member

    Not much research has been done on the lower extremity function / biomechanics and EDS. Therefore I’m trying to get some perhaps ‘anecdotic evidence’ of people who are familiar with this type of pathology. Of course ‘good old Google’ has taught me something but it all turns out to be the same info (more or less).
    Thanks anyway for the info on your experiences with the paeds vs. adults.

  5. Sally Smillie

    Sally Smillie Active Member

    For anecdotal / experience views, I would try centres that treat it as above, eg Great Ormond Street, but they do paeds.
    The hypermobility lead I suggested will have more info on adult centres. http://www.arthritisresearchuk.org/..._types__symptoms/joint_hypermobility.aspx#non
    Hypermobility Sydrome association www.hypermobility.org
    Ehlers-Danlos Support Group www.ehlers-danlos.org
    The treatment we use is loads of strengthening exercise outlined in ARC and orthoses, the prescriptions need to be more along the lines of how you would prescribe for paeds.

    Are you wanting a literature review or to do your own research, or is it just for clinical advice?
  6. toomoon

    toomoon Well-Known Member

    Hello joris.. I have written a book chapter on EDS and coincidentally have a duaghter with EDS. What is it you are chasing, perhaps I can help.
  7. Jorisds

    Jorisds Member

    Hi Simon,

    Sorry for my late reaction on your post. I’m writing up my PhD. proposal focussing on EDS and impact on lower extremity function.
    Some specific topics will be covered such as: gait variables, force plate analysis, EMG activity etc. I would also implement the use and outcome of functional orthotics within these patients. All extra information or experiences in these fields could help me.

    Thank you very much.


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