Ehlers-Danlos: A Mystery
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Why don't more doctors know about Ehler-Danlos Syndrome? I believe that a lot of people diagnosed with Fibromyalgia actually have EDS. There's no cure for Fibromyalgia either.
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@FMDArtery Great video, excellent job in public awareness to your rare disease, Ehlers-Danlos.
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@AshleyMariebjb im in your same boat..and finally 2 days ago they just determined i have hypermobility...good luck!
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I have not been diagnosed with EDS. but for the past 6 years i have been going from doctor to doctor. I have been told i have one thing by first doctor and then something else by the second doctor. In 6 months one year i saw in total 13 different people. I now go to the Cleveland Clinic because they think its a heart problem, i don't think it is. The more I look into EDS, i believe i have this. I go back to CC in less than a week, I'm suggesting EDS. All i want is to know whats wrong with me!!
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@MissMochibon gotcha. Thanks.
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@Misana EDSers are called zebras as they are medical anomalies. In med school docs are told when they hear hooves to think horses(common) not zebras(rare). Unfortunately, that means many doctors completely forget about the zebras(rare cases).
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@MissMochibon zebras? I have it too. I'm wondering if I understood your comment though...skin?
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I dont get why they use the beighten scale im hypermobile but im not that flexible cause of years of lifting weights, but then you can get people who aint hypermobile who can do everything on the beighten scale i'e martial artists!
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@libbydeland parents probably didnt know what it was to get children tested maybe
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I have EDS too! Go zebras!
MissMochibon 1 year ago 8
I have Ehlers-Danlos. And it's hard to explain to others that my joints pop out at random. My skin is stretchy, why I have scars from kindagarten [I'm 20], and everything else.
I'm going back to a specialist in October. They have yet to find what type I have. Some think I have alittle of all [Which Dr.s say is impossible. But I proved the impossible before, I could do it again.]
AshleyMariebjb 5 months ago 2