Which type of Castleman disease do you have?

@Courtney_J I have iMCD. I was diagnosed earlier this year. The doctors initially thought it was lymphoma, so I went through all the scans and had a biopsy. The tests came back indicating it was CD. I was found to be anemic, which is apparently common in iMCD.

@Courtney_J @friedegg I also have multicentric. I was just diagnosed a few weeks ago. I haven't been feeling well for about a year now and after months of pushing and refusing to accept the various things they tried to diagnose me with, after a biopsy they came back to me with MCD. In general I'd just been feverish and sleeping poorly and had swollen lymph nodes and after a scan they noticed my liver was englarged.

My brother also has iMCD. Interesting that UCD is the most common, but most people on here seem to have iMCD. Maybe it's because the treatment is more complicated? From what I've read in UCD I believe they can treat it by just removing the affected lymph node? Feel free to correct me if I'm wrong, of course.

👋 Hello everyone,

Just resurfacing this conversation in case some of you missed it! This is such an important topic, understanding which type of Castleman disease you have can really shape your care journey and connect you with others facing the same subtype.

Whether you’re newly diagnosed or have been living with CD for a while, this is the perfect moment to revisit this thread and share your experience. 💬

🔍 Have you had your subtype confirmed recently? How did you find out which one you have, and how has it impacted your treatment or symptoms?

@laracroft44 @LukeIan @Mrepasky @Sarahjane79 @Wellemma @Sashvin @Caski33 @Jurdie @Micki1559 @Faithforever7 @Lilly @georgiana.em_gil @Paddy123 @mjkr1227 @Alice03 @Jwalbornperales @kimberlypolner @Rzrbacknok @jjmurry @Mustang @JessicaAli @Bryan123 @Hender65 @Ikeaaron @Jenr87 @Justinw @emcd1951 @CarolineR @MayaBee @Dhagggart @Vaishali @ALIRAY @Qamar786 @DeeBee123 @george33 @Clair1066 @samora @NAGARAJAN @Lorraineanne @FrankNagel @Castlemanmom @Gwenmestel @lwchau @PENNYLOAFER22 @JillAK @Paola00 @Tormod @ImeldaLong @krystalrosen @Bumble88 @Beastie @EvaLally @Carfee87 @Ikeaaron1 @Leah1405 @MayaThethy @Ikeaaron77 @Olesia17 @MihaiR. @Gracefraser @Paul79

Let’s keep this conversation going, it could really help someone who’s still trying to make sense of their diagnosis.

Take care,

Somya from the Carenity team 🌼