I have hEDS and some of my visual problems are not on the lists I have seen, even by a professor who has seen multiple EDS patients. I don’t want to get into symptoms here.
I need to learn more about problems that are less common. I’m also looking for info to bring to new doctor(s).
If anyone knows of other groups, boards, sites with good info, please PM or reply. Or journal articles, books, personal experiences. Thanks!