Who is advocating for CCI? ( instability)

I have hEDS, Hypermobile Ehlers-Danlos syndrome, which also often comes with a host of other rare conditions: mast cell disease; craniocervical instability; occult tethered cord; multiple organ prolapse; etc.

I try to create awareness via Instagram… But I only see one profile on the whole site dedicated to CCI! Anyone or there? :wink:


I think there’s a few of us that incorporate it into our EDS advocacy, as that’s generally our experience with it. It’s definitely a topic I’m working on more in the coming months, due to my EDS causing significant back and neck issues.

I’d love to connect and work on an awareness project/campaign together.


I have HEDS… CCI and occult tethered cord are just it’s evil cousins. :wink: we definitely need to create more awareness! :princess:t2::heart::zebra:

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