Patients Castleman disease

What is your Castleman story?

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Courtney_J

Community manager

06/15/2020 at 12:00 AM

Good advisor

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,
Courtney

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RhettB

07/10/2020 at 4:47 PM

@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.

What is your Castleman story? https://www.carenity.us/forum/castleman-disease/living-with-castleman-disease/what-is-your-castleman-story-2201 2020-07-10 16:47:48

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mrepasky

12/12/2022 at 8:30 PM

Hi @RhettB,

I’m so sorry to see that you’re connected to Castleman disease through being a member of this CD group here in Carenity. I am the mother of a Castleman patient, and the Chief patient officer for the Castleman Disease Collaborative Network (CDCN). I wanted to make sure to reach out, so you know there is a team of people supporting you through the Castleman Disease Collaborative Network.

Have you had the opportunity to join the CDCN patient/loved one community? This is an amazing resource: https://cdcn.org/patients-loved-ones/patient-login/ where you can gain access to publications, resources to help you better understand your disease, and the most up to date information on our lifesaving research.

We would love for you to consider joining our registry or giving a blood sample for research to improve understanding of this disease. Visit www.CDCN.org/accelerate or email castlebank@uphs.upenn.edu if you’d like more information.

And finally, I am always here to help you!! As Chief Patient and Development Officer for the CDCN, I’m here to support all our patients and their loved ones throughout their battle! You can email mileva@castlemannetwork.org or call 610-304-0696 to connect, and I will help in any way I can.

Best Wishes,

Mileva

What is your Castleman story? https://www.carenity.us/forum/castleman-disease/living-with-castleman-disease/what-is-your-castleman-story-2201 2022-12-12 20:30:21

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