What Is Castleman’s Disease?

Castleman’s Disease is a rare, serious disease that affects the body’s lymph system. It is one of several diseases that are known as lymphoproliferative disorders. We don’t know exactly how many people in the world have Castleman’s Disease, but it is estimated that approximately 4,300 new cases are diagnosed in the U.S. each year. As with other rare diseases, it can be difficult to diagnose Castleman’s Disease, especially because the symptoms are often similar to those of other diseases and conditions.

Although Castleman’s Disease is rare, a community of patients, caregivers, and disease advocates are committed to raising awareness of the disease, advancing knowledge, and helping support each other.

It affects the lymph system

The lymph system is a network of lymph nodes and lymph vessels that runs throughout your body. It’s an important part of the immune system, and it helps your body fight off infections.

The lymph nodes are little round- or bean-shaped collections of tissue. There are small groups of lymph nodes in various parts of your body such as the neck, armpit, groin, and inside the center of the chest and abdomen. In Castleman’s Disease, too many cells grow in the lymph nodes. Because of this, it is classified as a lymphoproliferative disorder. Lymphoma, which is cancer of the lymph nodes, is also a lymphoproliferative disorder. Some people who have Castleman’s Disease are more likely than others to develop lymphoma.

Two types

There are two types of Castleman’s Disease: Multicentric and Unicentric. Multicentric Castleman’s Disease affects more than one group of lymph nodes. It may also affect other organs in the body that contain lymphoid tissue, such as the liver or spleen. Unicentric (or localized) Castleman’s Disease affects only a single group of lymph nodes.

Click here to download a brochure about Castleman's Disease.

Hear from Carl about the path to his diagnosis of Multicentric Castleman’s Disease.

Recognising Symptoms and Receiving the Diagnosis