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What does everyone else know about Ehlers Danlos Syndrome

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Do you know what Ehlers Danlos Syndrome is
I’ve heard about it 27%  27%  [ 13 ]
I have it 6%  6%  [ 3 ]
I know a lot about it 13%  13%  [ 6 ]
I don’t have it 2%  2%  [ 1 ]
I know someone with it 6%  6%  [ 3 ]
I don’t know anything about it 6%  6%  [ 3 ]
What is it 15%  15%  [ 7 ]
I have been told that I may have it 6%  6%  [ 3 ]
I don’t have anything to do with it 0%  0%  [ 0 ]
I am self diagnosed 6%  6%  [ 3 ]
I have an acquaintance with it. 4%  4%  [ 2 ]
I am a doctor and have seen it 0%  0%  [ 0 ]
I have a co worker with it 0%  0%  [ 0 ]
Other (with what you know) 2%  2%  [ 1 ]
Other (with what you have or a person you know has) 6%  6%  [ 3 ]
Total votes : 48

huimaa
Snowy Owl
Snowy Owl

User avatar

Joined: 24 Aug 2018
Gender: Female
Posts: 167
Location: Scandinavia.

25 Aug 2018, 7:42 am

I have it, for me it mainly causes muscle weakness, joint pain, neurological symptoms like dysautonomia, unstable blood pressure and heartbeat, which leads to dizziness and nearly fainting, also makes my light and sound sensitivity worse, causes brainfog and probably is a cofactor in depression and anxiety.

https://www.edhs.info/about1-cs05 there's interesting info about anxiety and EDS.



oceanrollercoaster
Butterfly
Butterfly

Joined: 21 May 2016
Age: 33
Gender: Female
Posts: 16
Location: NSW, Australia

30 Aug 2018, 3:15 am

I potentially had hEDS, but last year was diagnosed with joint hypermobility spectrum disorder due to the new guidelines. I also have dysautonomia, gut issues, Raynaud's, and other issues often comorbid with hypermobility disorders.