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Coping and support
By Mayo Clinic staffBecause Castleman disease is so rare, it can be difficult to discover you have the illness. Dealing with multicentric disease, in particular, can be challenging. Some people with Castleman disease may have to deal with multiple diseases, including HIV infection, AIDS and Kaposi's sarcoma. In the face of a serious illness, it often helps to:
- Learn all you can about Castleman disease. Learn more about how the disease progresses, your prognosis and your treatment options, including both experimental and standard treatments and their side effects. The more you know, the more active you can be in your own care. However, be aware as you read about Castleman that much of what is known about the disease comes from small studies or case reports, so this information may not uniformly apply to your situation.
- Be proactive. Although you may often feel tired and discouraged, don't let others — including your family or your doctor — make important decisions for you. Take an active role in your treatment.
- Maintain a strong support system. Strong relationships are crucial in dealing with life-threatening illnesses. In addition to friends and family, a counselor or a spiritual advisor also can be helpful. It's unlikely that you'll be able to find a local support group for Castleman disease, but check with your doctor to find out if he or she knows of anyone else in your area with the disease who might want to connect. You can likely find others with the disease to talk to online. The International Castleman's Disease Organization has a forum on their Web site for questions from people who've just been diagnosed.
- Castleman disease (Formerly Castleman's disease). American Cancer Society. http://documents.cancer.org/6636.00/6636.00.pdf. Accessed July 17, 2009.
- Aster JC, et al. Castleman's disease. http://www.uptodate.com/home/index.html. Accessed July 10, 2009.
- What is Castlemans disease. International Castleman's Disease Organization. http://www.castlemans.org/index.php?option=com_content&view=article&id=19&Itemid=27. Accessed July 17, 2009.
- Dham A, et al. Castleman disease. Current Opinion in Hematology. 2007;14:359.
- Pica F, et al. Transmission of human herpesvirus 8: An update. Current Opinion in Infectious Diseases. 2007;20:152.
- Dispenzieri A, et al. Treatment of Castleman's Disease, Current Treatment Options in Oncology. 2005;6:255.
