According to a story from today.com, Dr. David Fajgenbaum was first diagnosed with Castleman disease in 2010.
His first encounter with the illness was terrifying. He was confined to the hospital and many of his vital organs began to shut down. Dr. Fajgenbaum was finally able to achieve remission after intensive chemotherapy. Nevertheless, he was shocked out how little the medical community seemed to know about Castleman disease. As a result, David decided to research the illness himself and take his treatment into his own hands.
What is Castleman Disease?
Castleman disease causes a variety of life-threatening symptoms and is characterized by an excessive production of lymphocytes, a type of white blood cell. David had idiopathic multicentric Castleman disease, which is the most severe type. The precise cause is still not entirely clear, but David is positive that the immune system plays a significant role. Symptoms are severe and varied, including enlarged lymph nodes, fatigue, night sweats, weight loss, fever, enlargement of the liver and/or spleen, fluid accumulation, shortness of breath, coughing, and dysfunction of vital organs, like the liver, bone marrow, and kidneys. Treatment includes siltuximab (the only FDA approved treatment), chemotherapy, surgery, corticosteroids, and immunosuppressants. To learn more about Castleman disease, click here.
For David, he has relapsed a total of five times over the years because of Castleman disease. It also took almost three months before he was correctly diagnosed. Each time he relapses, his organs begin to fail and he has to be hospitalized for intensive chemotherapy. However, since he began to take research and treatment into his own hands, things have begun to get a lot better for him. His own doctor, Fritz van Ree, also helped collaborate with him on researching the disease.
His research led him to an immunosuppressing drug that had never been used on Castleman patients before, but David experimented on himself and tried the drug. Since he started using it, he has not had a relapse in four years. The treatment has also been tested on a small number of other Castleman patients and appears to be working. David hopes that full-fledged clinical trials could be just around the corner.
