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Castlemans Awareness is a nonprofit organization dedicated to bringing the very latest information on medical research, medical trials and medications for people diagnosed with Castlemans disease. Castlemans Awareness was established after my husband was diagnosed with Castlemans disease in 2001. At the time finding up-to-date information about Castlemans disease was impossible, and the realization of people in need of information about the disease ignited me to bring awareness to Castlemans disease.

The mission of Castlemans Awareness is to be one of the top resources for families with Castlemans disease. The organization desires for people with this disease to have somewhere to find information, support, and Medical Doctors in their area that are knowledgeable about the disease.

Castlemans disease was discovered by Benjamin Castleman in 1956. Castlemans disease is not considered a cancer but, acts more like a lymphoma like non-Hodgkin's and Hodgkin's lymphoma. It is treated like a cancer with chemotherapy and radiation. There are two types of Castlemans disease. Centric is a localized group of lymph nodes and multicentric is more than one group of lymph nodes affected. Castlemans disease is also known as giant lymph node hyperplasia and angiofollicular lymph node hyperplasia.

Castlemans disease, has a sever effect of the immune system. People affected by Castlemans disease have a very hard time fighting off any type of infection. People with HIV seem to be diagnosed with Castlemans disease more than people without HIV. Castlemans disease is considered a rare disease because; it is unknown how many people have the disease. Centric Castlemans has the potential to lay dormant for years before being found.

It is not a very well-known disease to the public sector, as well as, to the medical sector. Most Medical Doctors in oncology and hematology are not aware of Castlemans disease or how to treat it. Therefore, there is a huge need for more research and education about Castlemans Disease within the medical community.


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