Newly diagnosed in WA

[pberggren1]

The BVAS is a tool that the Wegs docs use to evaluate Wegs activity. Anything labeled as "major" involvement warrants ctx (or rtx), according to the JHU guidelines. I thought it was interesting that scleritis or sensorineural deafness are considered major. Someone with that involvement might not feel that sick and might not think they have severe disease.

I find that strange as well Sangye that sensorineural deafness are considered major.

[JanW]

I don't know, as someone who has neither, I would think that potentially losing your sight or hearing is pretty serious. Not as serious as other life threatening things that can happen with WG, but that's huge.

[Sangye]

That's just it-- they have it in the category with life-threatening things like alveolar hemorrhage, stroke, kidney failure, etc....

[JanW]

I guess that I look at it like paralysis -- not immediately (or necessarily ever, I suppose) life threatening but a serious and permanent life altering event. I would put stenosis in that category (don't know if BVAS does or not), and it's not immediately, only eventually, life threatening, and sometimes not even then.