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Ehlers-Danlos Syndrome Online Support Group

Is it ok to post links about EDS?


#1

I read the guidelines but still wasn’t sure if it was ok to post links or not. The informative type are the links I’m interested in, such as research and links like this one. http://ohtwist.com/2015/05/24/when-else-to-suspect-ehlers-danlos-syndrome/ That one lists a lot of the comorbidities that can happen with Ehlers Danlos.I have so much on that list, but it’s not my blog, just someone I follow. I use the links to show people what I’m dealing with sometimes because I have family members who insist that I look fine.

Pain is invisible. I dislocate so many times on some days that I just lay in the bed and try not to move. I think I have a ganglion cyst on my right pinky finger now too. I did just get checked for Chiari and CSF leaks though and I don’t have them! The neurologist said that I had an “amazingly good looking neck and brain for someone with mixed connective tissue disease”. He thinks I have more than HEDS.

The symptoms I went for are likely linked to POTS. I don’t have an official diagnosis of that because my cardiologist says a tilt table test might cause issues for me and that I don’t need a diagnosis to have an issue. Hugs to all who need one.


#2

Of course it’s fine, Waterswaves. What’s not acceptable is posts of a commercial nature, or posts soliciting money. Informational posts are fine, as long as they are not actively selling a product.
On another community, we had an author who posted and in every post he said “you should buy my book!”. We finally had to get rid of him. But people recommend books to read all the time, and that’s no problem.
All of that being said, there are, of course, grey areas. We never kick people off for going into a grey area … unless they do it all the time!
Seenie from ModSupport


#3

I have Chiari malformation 5mm, Ehlers Danlos Classic hyper mobile, and vasagal syncope or pots.
Do I think they are connected, studies are being done at this time, but a few neurologists and neurosurgeons say they are linked.
I know that having all three is painful and sometimes very hard to deal with.
My two daughters one diagnosed with Eds, same classic hm,and my youngest, has and had a lot of similar characteristics as we do. They both have had surgeries for problems they have had.