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My name is Anna. I was active on here a few years ago and then didn't keep up. my bad. Since then my life has taken dramatic changes and I'm back. I've been diagnosed with a rare genetic disorder of the connective tissues called Ehlers-Danlos Syndrome. It targets a protein in the collagen of your connective tissue like your tendons and ligaments, anything in your body that has connective tissue, including your gutt. When I was young, I was a little contortion artist. I could bend my body into all sorts of knots which meant that my brothers couldn't use me to practice any of their wrestling maneuvers, I would just slide right out of them. But now that I'm just past 50, I still have problems with joints dislocating and relocating at their own whim. I'm having difficulty with my left knee since last July and have just been up to Mayo Clinic to have them have a look at it. So my capacity for exercise is limited since I am on crutches. I don't know if there are any seated exercises that I could do, but I know I need to move more while being gentle on my joints. I am currently working with a nutritionist to help me lose weight and correct some eating habits that I have. Not bad ones. I just need to increase fruits and veg and balance out my meals. Eat more frequently and drink more water. I'm a milk drinker. And then we are going to involve my doctor in all of this so maybe we can take off a little more weight a little faster. It was all his idea anyway. I just want to take the pressure off my joints and get off the crutches and reduce my pain levels so I can move more. That would be a treat.

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  • melissa_ghikas
    melissa_ghikas Posts: 2 Member
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    Anna, I also have Ehlers-Danlos Syndrome - Hypermobility type.
    At age 17, my doctors told me I should never run or ride a bicycle again because of the degenerative arthritis in my knees. I went through physical therapy a few times and did the exercises at home. When I realized that I was completing the exercises, but was using the wrong muscles without knowing, I began to look for a cause. I have been able to to stay off crutches and out of a wheelchair for now. The physical activities I CAN do (there are so many I cannot) are walking hiking, water exercise, riding a recumbent bike, riding my Terratrike, and performing the EDS-specific exercises in "Living Life to the Fullest With Ehlers-Danlos" by Kevin Muldowney, PT.

    I have gained weight after consecutive bought a recovering from dislocations and frequent dizziness.