Robin Williams, MD, Pediatric Hematology Oncologist at M Health Fairview Masonic Children’s Hospital, discusses her experience diagnosing and treating a patient with Castleman disease (CD).
CD is a rare condition that affects the lymph nodes and related tissues. There are two main forms: unicentric CD and multicentric CD. Unicentric CD is a “localized” condition that is generally confined to a single set of lymph nodes, while multicentric CD is a “systemic” disease that affects multiple sets of lymph nodes and other tissues throughout the body. The exact underlying cause of CD is currently unknown.
Idiopathic multicentric Castleman disease (iMCD) often mimics other conditions such as blood cancer, autoimmune diseases, or infectious diseases. This often leads to patients going through many specialists and may take years before a proper diagnosis is made. This is exemplified in the case of Avion Dent, a high school student and star football player, who was hospitalized with a severe, mystery illness the summer before his sophomore year.
Initially believing it was a problem with his appendix, he underwent surgery before being rehospitalized when symptoms persisted. Avion presented with fluid in his stomach, enlarged lymph nodes, worsening kidney function, and debilitating fatigue. He was in critical conditions and on medications to control blood pressure and help “cool” his body down from the inflammation. After being seen by numerous specialists and undergoing various tests, he was finally diagnosed with iMCD TAFRO subtype in October.
Dut to the highly individualized treatment necessary for CD, Dr. Williams was able to create a treatment plan for Avion after consulting with colleagues and those familiar with CD.
For more information, visit cdcn.org. To watch a video on Avion and other patients’ experiences, visit knowicmd.com.
To learn more about Castleman disease and other rare hematologic conditions, visit https://checkrare.com/diseases/hematologic-disorders/