Coping and support

By Mayo Clinic Staff

Because Castleman disease is rare and often occurs with other serious illnesses, 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 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, try to take an active role in your treatment. Look for a health care team that makes you a partner in the decision-making process.
  • Maintain a strong support system. Strong relationships are crucial in dealing with life-threatening illnesses. In addition to family and friends, 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 there's anyone else in your area with the disease who might want to connect.
Sep. 03, 2011