I just found this and am reading everything and it's all so helpful. I was recently diagnosed with sneddons, or seronegative APS. My doctor has only referred to it as Sneddons? I have had a PE, clot in my right eye, and a stroke, I just turned 19. Im wondering what other people's journey has been like? The research is so scarce and some is so outdated I wanted to try and get actual people's stories. I have tested positive for Hughes once, but negative 4 times so they are pretty confidant with sneddons, especially because I present with the rash and all the neurological symptoms. I just got in contact with a doctor in Idaho that seems to have seen multiple sneddons syndrome so I'm hoping for more detailed care, since my local hematologist has had little exposure to it. Thanks all!