This goes for peers and physicians alike, chances are if you are uncertain about some aspect of an illness the patients themselves can fill you in.
Patients do so much research! When it’s a rare disease and many doctors have little to no experience with it patients are often educating physicians as well. Even when a doctor has expertise with that particular disease it’s the patients who are living with it everyday, they are the only ones who truly know what it’s like. Take away lesson? Take the time to listen.