What is EDS?

EDS is Ehlers-Danlos Syndrome, which is one of those things that one is born with. You can’t catch it from me, you can’t take it away from me (believe me, I VERY much wish you could!). It is hereditary (I was born with it) and it’s a little like being born with a body part missing: you can’t fix it and make a new part! If you think of Collagen as being a body part (well it IS a massive part part of your body!), … ALL the collagen in my body is faulty, and there isn’t anything that you, or I, can do about it!

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Some people refer to it as the glue that holds us together. As you can see by the above, it makes up most of the tissues our body! In a healthy human life the correct individual collagen molecules spontaneously assemble into a matrix or framework which supports the tissue . A disturbance anywhere along this process can lead to connective tissue instability, which leaves bones, skin, muscles, tendons, blood vessels, skin, cartilage, and of course most importantly, organs, fragile! … so no we can’t add more collagen to “fix” it, because the same mutation will always occur. It is part of our DNA. For people with EDS, their collagen is faulty, end of story.

So we break easily, we break badly, and we don’t heal well (and sometimes not at all). EDS is not degenerative as such, but throughout our lives we accumulate injuries, and depending on what those injuries are we slowly lose function in one or more limb or organ or whatever at a time…. permanently. We lose a few organs, and/or use of limbs, joints, etc, and suffer from the resulting affects of that. We gather pain. Deep seated pain that is permanent. If we are women we bleed heavily which in turns strips us of much needed iron stores in our bodies.

The name EDS is new to me, but I have suffered from it my entire life and debilitatingly throughout my adult life. But as it is an invisible illness, I have been able to keep it hidden from the world, my husband, and my family. It’s not that I haven’t been honest…. How do I explain something that I didn’t even understand myself? And if doctors didn’t know why I woke half my mornings with a dislocated jaw, with feet which hurt so much when they touch the ground that I cry out in pain, or why the pain in my hip is so incredibly painful that sometimes I struggle to breath, … then why on earth would I even try to explain to any of them that if I wake in the night I have no balance and that I walk into things, that my left leg drags, that I often can’t think of the right word to say, that my hands feel like they are going to fall off at each and every knuckle and joint…. and so on and so on and so on!

So, what is happening to me is not new. The name of it is, and the fact that it is no longer invisible to the outside is new (because I am almost never in public without either my crutch or my wheelchair or both),  ….. and so I am working through the diagnosis, the validation of every single teeny weeny ache and pain and so on ….learning different ways to manage the long term pain, work out where my limits actually are and stop pushing beyond them, along with the coming to terms with the fact that there is nothing that can be done to cure it! … and the fact that in some ways it is now often visible to the outside world and clipped my wings even further, brings it’s own challenges…


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