I'm totally with you Sam.

Calling a systemic disease 'limited' only adds a descriptor of how it has behaved thus far. And the thing about systemic disease is that it goes through the entire person's system, and can set up camp anywhere it finds a weak spot. So just because it 'only' affected sinuses, hearing and nose, doesn't mean that in its next iteration it will not go for your kidneys, lungs, skin, liver, etc.

If the 'limited' descriptor is only used in reference to past disease activity, without clouding judgement, then great, but we're all human, and come with bias, so this term will absolutely cloud the judgement of doctors who don't feel very comfortable in Wegener's waters. Maybe 'restrained' is a good descriptor as it implies that it's being held at bay, but as anyone knows, restrains can be broken. I don't know, I'm shooting from the hip, lol. But I totally agree with you in that it creates bias, and that bias can lead to diminished medical response, when a medical response is necessary.

We live in a world where it's easy to put people in pre-defined boxes, but this is proving to be a horrible exercise. We all know, especially on this website, that no disease affects two people the same way, and that no medicine affects two people the same way. A medical paradigm where people are treated as the individuals they are, is the one that we should all strive for.

Massive hugs Sam. What you're doing is a very good thing. Keep going hard my friend.

Peace,
marta