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Castleman's Disease

What is Castleman's Disease?

Castleman's Disease is a rare disorder characterized by non-cancerous tumors that may develop in the lymph node tissue at a single site or throughout the body.

 

Castleman's Disease is a rare disorder characterized by non-cancerous tumors that may develop in the lymph node tissue at a single site or throughout the body.
Acknowledgement of Castleman's Disease has not been added yet.
Prevalence Information of Castleman's Disease has not been added yet.
Synonyms for Castleman's Disease has not been added yet.
Cause of Castleman's Disease has not been added yet.
Symptoms for Castleman's Disease has not been added yet.
Diagnosis of Castleman's Disease has not been added yet.
Diagnostic tests of Castleman's Disease has not been added yet
Treatments of Castleman's Disease has not been added yet.
Prognosis of Castleman's Disease has not been added yet.
Tips or Suggestions of Castleman's Disease has not been added yet.
References of Castleman's Disease has not been added yet.
Science Magazine article on Castleman's Created by graychan
Last updated 12 Oct 2016, 06:55 PM

Posted by graychan
12 Oct 2016, 06:55 PM

Patient story and scientific information on Castleman's in Science Magazine, Vol. 353, Pages 212-215, 2016.

Castlemans Disease Created by samoyed1
Last updated 8 Jan 2014, 12:58 AM

Posted by mjh1967
8 Jan 2014, 12:58 AM

Thank you VERY much!

Posted by samoyed1
7 Jan 2014, 11:42 PM

Mine was diagnosed when they removed the entire tumour, I think thats the only way to diagnose, before that, they thought it was a nerve sheath tumour, they ruled that out and then thought it was lymphoma, right up until my results came back. Have you spoken to Jim johnstone? he can put you in touch with any experts in your area or nearest, they can diagnose you if your current place cannot. Do you use FB? this is pretty active International Castlemans Disease Organization https://www.facebook.com/groups/48343887930/ also https://www.facebook.com/care4castlemans and the web page which Jim runs, he is very active on FB http://castlemans.org/

Posted by mjh1967
7 Jan 2014, 11:06 PM

I really think I do, yet the Dr.'s haven't said it in cement yet. I have very large lymph nodes in my chest, on my neck and jawline and my immune system is wiped out. I'm waiting for results on recent blood work. The dr.'s are finding me very difficult to diagnose. It's worrisome. Hope I don't get lymphoma. Thanks for answering. I had a media stenoscopy last March where they took many samples of the lymph nodes in the chest. It was inconclusive. In September I had a lung biopsy, since I also have a rare lung disease and that's when Castleman's was brought up. They just aren't willing to or have enough proof that that's what it is yet.

View Full Thread (3 more posts)
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Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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I have been diagnosed with uncertainty with follicular bronchiolitis and Castleman's disease. The lymph nodes in my chest are very large, and also on my neck and jawline. My immune system is wiped...
Hi,

 

Last year I was diagnosed with Castleman Disease. I am 27 years old, I was the third case in my country and the youngest one. I was lucky, I had a singular nodule in my left lung and with...
I have known that I had some kind of autoimmune disease but it has taken over 2 years to finally diagnose me with castleman's disease
Living with Castlemans disease
I am 39 years old and was just diagnosed with CD in April of 2011. I still do not know what variant of the disease I have and I have just started a series of testing to try and get things figured...
I am a 45 years old. Came down with Castleman's in 2005, and had treatment here in Asheville and in at UAMS, Little Rock, Arkansas. I have had good days and fair share of bad ones since. The most...

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Science Magazine article on Castleman's

Created by graychan | Last updated 12 Oct 2016, 06:55 PM

Castlemans Disease

Created by samoyed1 | Last updated 8 Jan 2014, 12:58 AM


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