Six months ago, at age 40, I experienced a spontaneous vertebral artery dissection and transient ischaemic attack.

Almost a decade earlier, I had received a clinical diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) through consultation with a geneticist.

That diagnosis was neither straightforward nor timely. It required significant self-advocacy and a level of health literacy not all patients can access. I am a healthcare professional, with many advantages in navigating the health system, and yet my diagnosis still took too long to reach.

Ehlers-Danlos syndrome (EDS) is a heritable connective tissue disorder (HCTD) encompassing 14 subtypes with wide variation in prevalence and presentation.