I was diagnosed with multicentric Castleman disease in December of 2017. At the time of my diagnosis I felt shocked, scared, nervous. I didn’t know what was going to happen and I kept asking “Why me?” It was hard hearing I was diagnosed with a rare disease that currently has no cure. I was fortunate however to be diagnosed by a doctor who was very fluent in this disease. My doctor was able to get me started on treatments that have helped manage my disease. Castleman disease has drastically changed my life, I have had to stop working because the treatments drain me and my immune system is shot. My social life revolves around my treatment schedule. This is not the life I envisioned for me, but I fight everyday to overcome this disease.
Finding the CDCN was extremely helpful for me. They have given me confidence that I can beat this, provided information that has been extremely helpful in battling this disease and connected me with so many other patients and families who are going through this alongside me!