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Patients Castleman disease
What is your Castleman story?
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Tamragb
Tamragb
Last activity on 30/06/2025 at 01:57
Joined in 2025
Family/friend of a patient with Castleman disease since 2025
1 comment posted | 1 in the Castleman disease Forum
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Hi everyone, I am so happy I found this! My daughter who is now 12 has been battling multiple misdiagnoses for 7 years. For the past 2 years she has been unable to gain weight and get taller. After many many many tests they said she has castlemans disease. It took almost 1 year to get this treatment of Siltuximab started which officially starts tomorrow. We are from Canada and at our children's hospital this medication has not been used to treat this so, to say I am nervous is an understatement. Thankfully, after reading some of your posts seeing that this has helped has eased my mind a little!
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Courtney_J
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Courtney_J
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Last activity on 13/10/2022 at 16:47
Joined in 2020
1,279 comments posted | 15 in the Castleman disease Forum
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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!
Take care,
Courtney