My Journey with Castleman Disease
I was diagnosed with iMCD (idiopathic Multicentric Castleman Disease) in March 2020, after nearly two years of searching for answers. My lymph node was even sent to the Mayo Clinic for a second opinion, and looking back, I’m sure I had Castleman’s for many years before my diagnosis.
Shortly after my diagnosis, I found the Castleman Disease Collaborative Network (CDCN). The staff were incredibly supportive, providing answers to my questions and helping me share my medical records, lab results, and biopsy tissue for research.
I also joined the CDCN’s patient group on Facebook, where I met a caring and supportive community of patients just like me. I later became part of the Warriors team, which brainstorms and raises funds to help find a cure. Being part of this group has been an amazing experience, and I’m excited to keep working towards our shared goal of finding a cure!