My name is Laura Anne Mayben. I was diagnosed with Castleman disease (idiopathic multicentric) in September 2013 at the age of 44. My lymph nodes in my abdomen and pelvis were enlarged and I had surgery to remove one of the largest of the nodes. Since that time I have been through multiple different types of treatments – rituximab, Cytoxan, siltuximab, etc.
Currently, I am taking Actemra (tocilizumab) every 2 weeks for and undetermined length of time.
Castleman disease is a very debilitating and hard to treat disease. You learn to take things day by day and try to live your life to the fullest.
Connecting with the CDCN and Dr. David Fajgenbaum, was one of the best things I was able to do – and becoming a Castleman Warrior to help raise awareness, help those being diagnosed with CD and raising funds for the fight for a cure. Also, I recently donated samples for studies to find a cure and joined the ACCELERATE Study. It is very important to me and to our Castleman family to help in anyway that we are able.
#CDCN #CastlemanWarrior #findacure