As a person with EDS, i would counter that it is way more common than realised. As its a systemic genetic driven inability to produce collagen correctly, the only cure will be when we can rewrite and organisms genetics wholesale, which we are not exactly close to.
Treatments are poor, the condition itself and its systemic effects are almost unstudied. Most doctors either dont know about it or their knowledge stops at 'flexible'. Some doctors (surgeons esp) may even decline to work with you if you disclose EDS.
CSF leak, either from a lumbar puncture, or from things like chiari malformation and other cervical abnormalities are a well known phenomenon within the community. A person complaining of persistent postural headaches usually gets csf leak as the first response from said community. It is however, incredibly difficult to get a doctor to be willing to diagnose it, to have it competently found, and then patched.
Treatments are poor, the condition itself and its systemic effects are almost unstudied. Most doctors either dont know about it or their knowledge stops at 'flexible'. Some doctors (surgeons esp) may even decline to work with you if you disclose EDS.
CSF leak, either from a lumbar puncture, or from things like chiari malformation and other cervical abnormalities are a well known phenomenon within the community. A person complaining of persistent postural headaches usually gets csf leak as the first response from said community. It is however, incredibly difficult to get a doctor to be willing to diagnose it, to have it competently found, and then patched.