Gastropariesis: EDS Awareness Month Day #2

One of the MANY complications of Ehlers Danlos Syndrome is gastropariesis which is literally stomach paralyisis. I have this as as well as intestinal dysmotitlity. Basically my digestive system doesn’t move. These conditions are very hard to treat and there are very few options. They have medication which doesn’t always work, they have pacemakers which almost never work, and they have what most people end up with which is supplemental nutrition. Thankfully right now my worst flare ever is subsiding, but on Monday I was in the ER in tremendous pain and no one could help me. EDS is a complicated disease. There are so many conditions that go along with it and treating them all at the same time is not a small feat. For me, my GI problems are by far  the worst part of my EDS. I can’t escape them and almost nothing I do helps me. Ive been trying to find a competent GI now for months and most of them are far away and/or hard to get into. We need more education for medical professionals about EDS so that we don’t have to live in pain while trying to find someone who can help us. We shouldn’t have to choose between eating and dying in agony. I sometimes can’t believe we live in the year 2015 and these are still problems of awareness and under education, it boggles my mind. I hope that by reading my blog, you learn something and maybe next time you are talking to someone you can ask, “Have you ever heard of ehlers danlos syndrome?” I hope that this time next year nutrition wont be a problem for me, but as with anything in EDS you cant predict the future. All I can do is try to move forward and strategize about what comes next.

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