My son Will was diagnosed with Idiopathic Multicentric Castleman Disease in the summer of 2022 at the age of 15. We are incredibly grateful to the pathologist at Children’s Hospital in Denver who was able to put the pieces together and reach a diagnosis, and to the CDCN and Dr. Fajgenbaum whose development of treatments for Castleman saved Will’s life.
Will is currently doing well with regular Siltuximab infusions. My goal as a Warrior is to support the CDCN so it can continue to identify more treatments for Castleman Disease and its symptoms (and perhaps find a cure someday), and to support Castleman patients and caregivers with love, sympathy, and community as we all navigate this unknown condition.