I know more about my rare condition than most doctors I meet and I've started lying about symptoms just to avoid the educational conversations that should be going the other way.
More people experience this than they realize.
The inversion of the traditional knowledge hierarchy creates an exhausting burden of educating those who should be providing care.
“Where Are You with Rare and orphan conditions?”
Peri can explain why this happens, help you decide if this is the right situation for you, and point toward the right journey or coach.
If this sounds familiar, the Library can help you find the bigger picture.