What is your Castleman story?


Patients Castleman disease

1 reply


Topic of the discussion

• Community manager
Posted on

Hello everyone,

Welcome to your Living with Castleman disease forum here on Carenity! This space is dedicated for you to share your questions, stories, fears, advice, and much more with other members with CD!

As you know, being diagnosed with a chronic illness, especially a rare one, can be a life-changing experience. So let's talk about it together! 

How was your diagnosis experience? How long did it take for you to be diagnosed with CD? What were the signs or symptoms that made you feel like something was wrong? How are you doing today?

Feel free to share your story here! emoticon cute

Take care,

Beginning of the discussion - 7/10/20

What is your Castleman story?

Posted on

@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.