Original
The last data say 1 in 5,000 but probably way more. What happens is that this is a syndrome that not many doctors know about. So this means that even if there are more people who have it, their doctors won't know what it is and they will live undiagnosed. Supposedly it affects more women but that might be because statistically women complain more about their pain than man.
My mother and my grandmother were diagnosed because I started doing research on my problems and discovered EDS.