The Realities of EDS

I want to talk about one of the realities of EDS. Shortened life span. The past few days I came across a couple of documentaries about EDS. One family lost their daughter and grandson to EDS within 6 months of each other. The thing with EDS is you never know what is going to happen when, am I going to have a day where nothing goes wrong or is my aorta going to rupture while I walk down the street. Although I keep a check on all my organs and heart things can happen. A joint can dislocate the wrong way and cut of blood supply. A cut could mean you bleed so much before you get medical attention that you loose a lot of blood. But at the same time you can't dwell on all these things and be scared. You have to live everyday like its your last because, it very well could be. I am thankful that I have my faith and I know this life isn't the end but its still a scary thought that you never know when your body is going to fail you, for the last time. I try and remember to tell those around me how much I love them because there are so many unlucky ones with EDS who never got the chance. Some with EDS are only diagnosed by autopsy.

Please remember to treasure everyday and to tell those around you that you love them.

This is why we need more awareness and diagnosis's as there are things you can do to prevent things like this happening (even though there is no way to fully prevent everything)