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Yes, I’m aware of your stance on this. I still don’t understand how a group a people with clearly pathological hypermobility to the point of needing wheelchairs could be described as “a variation of normal”. Yes hypermobility is normal. What they live with is definitely not. Nothing you have...

Indeed, it’s also puzzled me that out of my real-life friends (not through any health groups - so that’s a fairly random sampling of several hundred people) I have 3 friends who fit this description. If you take into account my health groups, it’s many more. I believe the dislocations are only...

@Jonathan Edwards Can I ask a bit more about why you call hEDS a make-believe diagnosis? I have quite a few friends and acquaintances with this diagnosis, and I would say they fall into 3 groups: 1) people who are basically healthy but with niggling joint issues and maybe a prolapse (at a...

Personally, I would also LOVE to see this kind of study!! I’m not sure why it hasn’t been done, many patients are longing for this! We can only hope that it might come. At the same time, it’s very important to remember that CCI is essentially a clinical diagnosis. The surgeons performing these...