EHLERS DANLOS is a genetic disorder of the connective tissue, there is therefore NO CURE available as scientists have not yet found a way to reprogram the genes to fix the problem that causes Ehlers Danlos syndrome and other genetic disorders. It effects the entire body. Its not a cold. You cant will it away its not well known so people are constantly giving complete useless opinions on it despite absolutely zero knowledge about how it works. Its genetic. Its our DNA. From the very moment our gene strands formed. We have it and will have it until after we die and all thats left is a body That is still genetically off. There isnt a treatment to stop it, or slow it down, or get rid of it we dont go into remission, or get better and go on to live a healthy life. Literally all there is for us, if you are lucky enough to be able to afford quality medical care and depending on the level you are affected is managing the best you can for as long as you can. That is why awareness is needed. Awareness means donations, donations mean funding, and funding means desperately needed research. Some of us have accepted that the chances of treatment, let alone a cure will likely not happen in our lifetimes. Its a hard pill to swallow. all the while fighting because no one has heard of it, and the longer it takes to find a doctor knowledgable enough to realize whats wrong with you, the higher chances of you doing long term damage to a body that cant be fixed. Surgery isnt a fix for us, when we need surgery it is a risk. And accepting that even should we have surgery? We will eventually be right back were we started because its just how our genes have made us. Do us favor? Spread awareness. Donate. Give us the same chance you would want to I have if you where Ill with something like this. And for the love of everything sacred. Stop minimizing our suffering because it is inconvenient. Too many of us do damage in an attempt to be accepted by people who refuse to acknowledge how serious this really is. Offer support. A shoulder to cry on, a hand to hold, an ear to listen. And most important, the understanding that unless you have it. Are you suffering with it? No. You really dont and likely never will completely understand. But you can empathize and show compassion. So do that. For some of us its the difference between being too tired to keep fighting and wondering how long not only how long our bodies can do this....but how long we are willing to do this. A beautiful piece written by fellow friend and EDS warrior Jen Dawson
Posted on: Mon, 06 Oct 2014 03:06:19 +0000
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