Finally learning 7 years ago that I in fact have Type 3 Ehler Danlos Syndrome NOT Benign joint hypermobility syndrome which is what I believed for 38 years!
Try to find people close by. I set up a Facebook page with some help of a friend and found some lovely ladies who I meet up with every few months, this can really helpful as you all talk about treatments,drugs,etc.but you can laugh as well