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Leptin
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Flexible Joints

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by newearth, Jun 7, 2013.

  1. Symptomatic

    Symptomatic Senior Member

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    What gene are you looking at?
  2. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    COL3A1 and TNXB
  3. Allyson

    Allyson *****

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    Australia, Melbourne
    Yes it seems you are right - the joint hypermoblility IS significant John - It is mentioned as being a common symptom in the 2012 International consensus doc. There is a score you can do to eliminate subjectivity - the Beighton Score and also the Brighton Criteria are used to measure it.

    CHeers
    Ally
  4. Allyson

    Allyson *****

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    Australia, Melbourne
    Hi TCP,


    you say you don t have EDS but have you been properly tested for it? Over-flexing elbows and knee dislocations make it sound highly likely......Many doctors - even geneticists - know next-to -nothing about EDS and say "you could not have it because it is rare" - so it has become widely under-diagnosed and it becomes a viscious circle.

    There is a symptom check list here if you want to look into it further -
    http://forum.notcrazy.net/index.php?topic=9571.0

    Then you would need to find a KNOWLEDGABLE specialist -....funny it sounds like ME /cfs ....so many docs told me I did not have it - or did not diagnose it - til I researched it myself on the internet and got the Dx confirmed by 2 specialists in the area. There are lots of DS facebook page where you can as for specialists near you but if you are in Britain Prof Rodney Grahame at UCL London is top of the field it seems.

    Cheers

    Ally
  5. Allyson

    Allyson *****

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    Australia, Melbourne
    It is funny when you guys post pics like that then say you are stiff!! I cannot even touch my ankels and have always been really stiff and inflexible - I suppose that is why the scales and Criteria were established for subjective measurement - if you are hypermobile since birth then the bendiness seems totally normal to you .....so it is hard to assess.


    Ally
  6. Allyson

    Allyson *****

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    Australia, Melbourne

    Also I note you say you have POTS too TCP - that is very common in EDS and some think EDS may be a cause of it.....


    Ally

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