[haldujai]

I think you’re hitting the nail in the coffin.

As physicians were trained on the common and the deadly. We’re not that great at rare non-immediately life threatening conditions due to the nature of the discipline.

We’re trained that when you hear hooves, think horses not zebras. This does unfortunately mean that patients with zebras are often misdiagnosed for a while, but that’s because our approach isn’t intended to catch every zebra (which would be impossible).

The other element is to avoid unnecessary harm. Often the tests for zebras are nonspecific and overlap with other conditions (I.e. to be considered after exclusion of other aetiologies).

A late diagnosis of EDS fits in the zebra categories and probably wouldn’t have been picked up until you saw a rheumatologist or vascular specialist at a centre which deals with these.