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Riding With Ehlers Danlos Syndrome?

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  • Riding With Ehlers Danlos Syndrome?

    I have a rare genetic condition called Ehler's Danlos Syndrome (EDS) caused by a mutation that causes a lack/loss of collegen in joints and other issues. Almost every system, except respiratory and immune, is affected. I have:

    -My joints are incredibly loose (think gumby) and, while I don't totally dislocate things, they do subluxate alot.
    -Problems with depth perception and Visual/Spatial issues (walk into objects I see).
    - Gastroperesis
    -Autonomic Nervous System Dysfunction
    -TMJD

    My problem with riding is mounting/dismounting. When I used to ride (haven't in a few years) my knees would "lock up" and getting down was hard and painful. Getting up I felt like I was going to tip over backwards.

    Any words of advice? Anyone else riding with this disorder?

    I don't have a riding horse right now, I have my miniature who thinks he's a goat.

  • #2
    While never formally diagnosed, my Orthopedists think I probably have EDS. As one surgeon put it, "you're poorly designed and built of crappy materials". I have had problems with dislocations and subluxions all my life. My joints damage easily and my bones break more easily than my Dexa scans would indicate.

    Since my knees hyperextend, I've been told to keep them slightly bent when jumping, running or any other activity where force is coming down the bone column to help protect the joints. I use a mounting block to get on (less risk of getting torqued if the horse should walk off or spook) and if my knees are bothering me, I'll use the mounting block to dismount as well.

    Heat seems to help with the pain and stiffness.

    Comment


    • #3
      As Kestrel said, keep your knees slightly bent for mounting and dismounting. Use a very tall mounting block that will allow you to step across your horse easily, so you are not having to reach and extend as much.

      I have EDS. I have always had strong muscles that seem to help stabilize my joints well. I have had surgery multiple times because of it. My left ankle has been stabilized. My R foot developed a bunion early on...had that removed. My right shoulder has been stabilized, but I had a traumatic injury to that. Now, my right shoulder is completely fried. It is very unstable, but surgery would be worse than any instability.

      I suspect that I have other issues with EDS, that I haven't been officially diagnosed with. I bleed easily. I don't notice cuts until there is a lot of blood. I am hyper-sensitive to very light touch, but pain doesn't bother me.

      My right ankle subluxes if I land on it. I step down from the saddle instead of pull both feet out of the stirrups and jump. I also use the mounting block to mount. I should use it to dismount.

      Life is challenging, but I don't let it stop me from doing what I want to do.
      Life is too short to argue with a mare! Just don't engage! It is much easier that way!

      Have fun, be safe, and let the mare think it is her idea!

      Comment


      • #4
        I have it, was diagnosed at the Stanford Genetics clinic. Doing PT or Pilates with an experienced rehab person is helpful, I work with a local pt clinic that has several EDS patients. I would recommend riding shorter horses , and mounting and dismounting at the mounting block

        Comment


        • #5
          riding with EDS

          Originally posted by Goatie View Post
          I have a rare genetic condition called Ehler's Danlos Syndrome (EDS) caused by a mutation that causes a lack/loss of collegen in joints and other issues. Almost every system, except respiratory and immune, is affected. I have:

          -My joints are incredibly loose (think gumby) and, while I don't totally dislocate things, they do subluxate alot.
          -Problems with depth perception and Visual/Spatial issues (walk into objects I see).
          - Gastroperesis
          -Autonomic Nervous System Dysfunction
          -TMJD

          My problem with riding is mounting/dismounting. When I used to ride (haven't in a few years) my knees would "lock up" and getting down was hard and painful. Getting up I felt like I was going to tip over backwards.

          Any words of advice? Anyone else riding with this disorder?

          I don't have a riding horse right now, I have my miniature who thinks he's a goat.
          Hello, I also have EDS. I have been diagnosed with it since 1993 and have had many many surgical repairs. I do dislocate but can't usually get my dislocations back in place with out help. I am at a point that I can not ride longer than 2 hours tops. My hip and legs and back get to hurting so bad I can't ride any longer. I have tried riding till I start to feel sore and getting off and building up my riding to a bit more each day but in the end of the day I can still only get up to about 2 hours tops. I have been told to get rid of my equines and forget it but it is in my blood and soul and I just can't imagine not riding or being with my equines. I also tried just having a few mini horses but I love riding. Had my mini's trained to drive but I could not get the riding out of me and went back to riding. There was a time I had not ridden in about 4 or 5 years so I found a therapeutic riding instructor that helped me regain my confidence and through that experience I started riding again. I now ride a older mule and she takes really good care of me. If a joint can go bad I have had it. No kidding -- I have had so many issues and lay ups I wonder why I am still here trying at times and then I get to feeling better and go at it again.Just today I watched a video called Wild Horse Wild Ride and it features a friend of mine and after watching it thought t myself yeah i want to adopt a mustang and do that. I know I can't in reality but it was fun to think about. If you would like to talk to me about your condition feel free to email me privately or call me anytime. I can share experiences with you and help you boost your own confidence. The biggest thing is to accept it and move on I say. So a leg is useless for example, learn to compensate with the other one. lol Get my drift?? Hang in there. weewik@grm.net Edie

          Comment


          • #6
            Another bendy. Will write more later.
            "You are a child of the universe, no less than the trees and the stars;
            you have a right to be here." ~ Desiderata by Max Ehrmann

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