Churg-Strauss syndrome

I’m new here on Reddit—just signed up specifically because I’m trying to wrap my head around Churg Strauss syndrome.
I realize how rare this condition is, but I was really hoping to connect with someone living with it... or even better, someone who has been through it and is doing well now. I just want to hear, firsthand, what life actually looks like when you're dealing with all of this.

I’ve spent quite a bit of time scouring the internet, but since I’m based here in the States, I feel like it would be much more helpful to hear about how treatment works in the US and what kind of experience I should expect from my doctors.

Thanks so much in advance for any info or guidance you might have.

I realize this condition is pretty rare, but I’m sure there are people out there dealing with it... they just clearly aren't hanging out on Reddit.
Anyway, if anyone happens to have any insight—even just a suggestion on what steps to take next—please, could you just shoot me a DM? No need to reply publicly to the thread. Thanks.