Friday, January 20, 2006

Ehlers Danlos Syndrome

My kids and myself (as designated genetic carrier) have just been diagnosed with Ehlers Danlos Syndrome. My sister Deb’s 25 year old son was diagnosed with this last fall after suffering chronic joint pain and weakness in his legs. For many years he did a lot of break dancing and martial arts and more recently extreme yoga which has damaged his joints. He is now walking with the aid of metal crutches.

Ehlers Danlos is a connective tissue disorder which presents itself in may different forms. We have the hypermobility form. Which means my family could have descended from pretzels. We are all very flexible, our joints bend beyond where they are supposed to. Unfortunately for us it means our bodies do not produce the collagen needed to keep us flexible over time and if we are not careful- early arthritis. This would explain why I can not do the Lucky Shie style of handwork, as much as I would like to do it. In 2001 when I lived in Austin my art quilt group had a four day workshop with Lucky and my thumb has never been the same. Any stress on the joint causes pain. So now I have a valid excuse for avoiding handwork and doing everything by machine.

At this point my kids are perfectly healthy, we are lucky to have found out about this so that we can hopefully prevent the damage that my nephew is now dealing with.


  1. I'm familiar with this disease.I have a friend who has this along with her 3 children. Makes life a bit challenging for my friend at this point

  2. Anonymous12:22 AM

    Check on some Silver Ring Splints - they will help with the fingers and handi-work.

    Come join us at the yahoo ceda group; there are over 400 there exchanging information on the disorder.


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