Im going to say something here that is not going to be well received by some in the Ehlers Danlos Syndrome Community, but I think it is something that needs to be brought to light and needs to be discussed. I just ask that we keep the discussion friendly and supportive and dont resort to name calling and personal attacks. If you have Ehlers Danlos Syndrome, getting a diagnosis is often a hurdle that requires Herculean efforts to overcome. Once you have the diagnosis a sense of relief washes over you. Then you realize that you have a lot of crazy symptoms and start blaming EDS for all of them. Unfortunately, EDS is not to blame for everything. Unfortunately? Yes. Unfortunately. If EDS were to blame for everything it would make it a hell of a lot easier to figure out what the faulty genes are, but its not! EDS is not the reason for everything that happens to you!!!! EDS is only one small piece of your puzzle. Ehlers Danlos Syndrome is a connective tissue disorder. It has a set of criteria and if you meet those criteria you have the syndrome. It also has several co-morbidities (other symptoms/disorders/illnesses that are often found in individuals with EDS). Just because some people with EDS have something it does not mean that the symptom/disorder/illness/disease is caused by EDS. This is a very important distinction!! Case in point: I have four children with EDS. All four children had a bone density scan (Dexascan). One child had a lower bone density than the other children, but all were within normal range. Is EDS to blame for the lower bone density? NO! The one who had a lower bone density has malabsorption issues. She tends to bruise more easily than the rest too. Her lower bone density is because her body is not absorbing the nutrients it needs to make her bones strong and that is not because of her connective tissue! Whats my point? Its easy once we have a diagnosis to do the same thing that the doctors do and blame everything on the elephant in the room, but the elephant isnt responsible for it all. When we blame every symptom, every ache, every issue... on Ehlers Danlos Syndrome we muddy already muddy waters. We are trying to raise awareness of the disorder and make people understand what it is and why it is important, but when we lump everything under the sun together and we blame it on EDS we blur lines that we need to be making clear. EDS is not, has not, and cannot cause every symptom that every person with the disorder has. PLEASE, for the sake of everyone with Ehlers Danlos Syndrome, stop blaming everything on EDS! Lets make the lines clear and do our best to clean up the muddy waters.
Posted on: Mon, 01 Dec 2014 23:19:56 +0000
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