My journey with Castleman disease started Friday, June 13th, 2014. I took myself to the ER for severe pain in my abdomen. They found nothing. For a year and a half after that, I was in and out of the hospital many times. For a year and a half I had no answers for what i was experiencing. I’ve done dialysis, had countless blood transfusions, two kidney biopsies, two lymph node biopsies, and had liver problems. I’ve had my weight go up and down 50+ pounds in a 2 week period. I’ve had peripheral neuropathy and lost most my feeling in my legs and feet. I’ve lost nearly all my strength, needing help with simple mobility. I saw every kind of doctor there is and had every test imaginable. Nothing seemed to make sense. Finally, in August 2015, after my second lymph node biopsy, I was diagnosed with idiopathic multicentric Castleman disease. After hearing words like “lupus” and “lymphoma” thrown around so much prior to this diagnosis I was relieved to hear I had neither of those. Unfortunately, this diagnosis was no better. I was also disappointed to realize that with my diagnosis came very few answers as there is still so much to learn about this disease. I had to google it alongside my doctors. It’s been a challenging battle and finding a treatment that works for me hasn’t been easy. I have recently finished treatments of chemotherapy and Rituximab and so far the results are very promising. I have now been in remission for over six months. I remain optimistic, but the fear of recurrence is very real. I am dedicated to raise funds for the CDCN to help advance research and awareness so that one day, we can prevent and cure this horrible disease.
Castleman Warriors