What is your Castleman story?

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Courtney_J

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06/15/2020 at 12:00 AM

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Courtney_J

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Last activity on 08/08/2022 at 11:09 AM

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1,339 comments posted | 5 in the Living with Castleman disease group

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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!

Best Wishes,

Mileva

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RhettB

07/10/2020 at 4:47 PM

RhettB

Last activity on 07/10/2020 at 4:41 PM

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3 comments posted | 3 in the Living with Castleman disease group

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@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/other-discussions/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

mrepasky

Last activity on 12/12/2022 at 8:24 PM

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1 comment posted | 1 in the Living with Castleman disease group

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Hi @RhettB,

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!

Best Wishes,

Mileva

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

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Somya.P

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04/23/2025 at 7:13 PM

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Somya.P

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Last activity on 08/18/2026 at 10:42 AM

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1,015 comments posted | 4 in the Living with Castleman disease group

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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 🌼

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Somya from the Carenity team

What is your Castleman story? https://www.carenity.us/forum/other-discussions/living-with-castleman-disease/what-is-your-castleman-story-2201 2025-04-23 19:13:37

What is your Castleman story?

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