Just out of interest I would like to know how many people are double jointed? Last year the BBSA the SJOGRENS charity did POTS and hopefull they will do Ehler-Danlos at their conference too. I have PsA so I go down the negative path but as well as EDS my mother gave me psoriasis. If that wasn't enough she gave me Chiari1 too. I have had a letter today saying as EDS is now in Rheumatology your Rheumatologist must do the necessary tests! My poor consultant knew about the SS & I on the drug for Lupus, I told her about EDS and POTS she agreed and the POTS is confirmed, I'm bendy too that's confirmed. But how many Rheumatologist's will know about Chiari1! So to leave UCH to be told I'm amazed your alive was funny but now I'm furious. How on earth are any Rheumatologist's going to understand Chari 1 as its a neurological problem! Sorry for the rant folks but I am cross.
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