No I haven't but I will look it up now ! Thanks Susan
My daughter has EDS. She was diagnosed in college. She had a lot of pain as a kid but no one knew anything about it then. She has hypermobile eds and it's pretty severe. Prednisone has recently helped with migraine pain for her thankfully. There are other conditions which sometimes accompany eds, which my daughter has as well. From what I understand it's not always the case, depending on the level of the disease you have. If you have any specific questions, I'm happy to help. There's also great fb groups for eds'ers and other rare diseases like it. Treatments really depend on your diagnosis. Just a few other diagnosis my daughter has are gastroparesis, mca, pots, migraine, primary immunodeficiency disorder (which she is on ivig treatments for and it has helped immensely). But once again, it depends on the level of eds you have. Hope this helps a little.
Amanda Workman Moderator
I also have hypermobile eds. My diagnosis is still pretty new for me. It is taking a lot of doctor's appointments to try to figure out. I will have to look for the Facebook groups. I know how great it can be to have a community available. Thank you so much - Amanda W (team member)