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.

Arrow Shape Facebook Instagram Twitter Youtube Play Arrow Left