Hello all, I’m very glad to have found the zebra club. I either have HEDS or HS. I’ve never done genetic testing but that won’t change my experience and symptoms. I struggle daily with pain and that balance of movement vs pain. I’m a mom of 3 adopted kids with special needs ages 5,6,7. So…my life is not really conducive to rest but I believe that everything is a gift (which was my father’s mantra during the intense suffering of the last six months of his life). I don’t always feel that way, but that is what I believe.

Posted by cjclymer at 2023-02-22 02:33:49 UTC