Ehlers-Danlos Syndrome - Experience

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What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

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Comment from: Mommaofmany, 35-44 Female (Patient) Published: October 16

I only discovered the name Ehlers-Danlos syndrome a couple of years ago. I have always subluxated and dislocated easily, especially my right knee and hip. Bruising easily, bad teeth, very fast births, joint pain, all add up to EDS Type 3. Nearly ten years ago, I had such pain in my joints that I couldn't stand to be touched, even by my children! Everything hurt. I read about kombucha, a cultured tea that helped joint pain, so I tried it. It took about 3 weeks, but I noticed that my pain was gone! Later, I thought it was a fluke, and I got lazy and stopped drinking it. The pain came back. Now, ten years later, I am a faithful kombucha drinker. The subluxations and the dislocations continue, I still bruise easily and all the rest, but I am joint pain free, with no medication. I have changed my diet some, too, to reduce inflammation, but the pain was gone once I used kombucha, even when my diet was full of processed foods.

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Comment from: crazy dave, 55-64 Male (Patient) Published: October 29

I was diagnosed with Ehlers-Danlos syndrome (EDS) at 11 years of age. Hypermobility of joints has caused many dislocations of shoulders, knees, and fingers. I am now 62, and I can tell you that the best remedy is low impact exercise and a lot of it. The stronger the muscles are, the more support the joints have. Please try to back off the narcotics, if humanly possible and get plenty of vitamin D and protein in your diet. Good luck!

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