Having a disease without a name

Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off steroids. But mostly posting to wonder if anyone else has something rare that doesn’t actually have a name yet. My doctor said I could name it someday 😂 but really it’s hard. We have a treatment plan that generally works and pathophysiology but no clear diagnosis. I’m not complaining because years ago I had no treatment and lots of gaslighting so this is a preferable problem to have.