What is your Castleman story?

@Courtney_J Hi, I just found this site so I'm a bit new to this. My brother was diagnosed with Castleman and it was a real shock for us all. It took a long time for him to get a diagnosis since it's so rare. I think he first had fever and extreme fatigue and then enlarged lymph nodes. He went through so many tests and things, I think they went through everything from the flu, to mono, to even lymphoma. I don't think they figured out what it was until they did a biopsy. We're all still just overwhelmed and confused about the whole thing, the doctors didn't really give us any information to go on, so I've found myself here.

Hello everyone,

How are you doing today?

This seems like an important discussion. Being diagnosed with something as rare as Castleman disease can feel like you’ve landed in a world with no map. One member once said it felt like “trying to explain a thunderstorm to someone who's never seen rain.” That kind of isolation and confusion can be so real.

So let’s bring this conversation back up. 💬

@mrepasky @castlemanvan @toya686 @Dada2115 @remarc

How did your journey with Castleman disease begin? Was it a quick diagnosis or a long, winding road? And now that some time has passed, how are you managing day-to-day? Any lessons or insights you’ve picked up along the way that might help someone just starting out?

I’d love to hear more about what you all think!

Take care,

Somya from the Carenity team 🌼