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.
Patient story and scientific information on Castleman's in Science Magazine, Vol. 353, Pages 212-215, 2016.
Thank you VERY much!
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/
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.
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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.
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.
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...
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