Welcome to the International Castlemans Disease Organization website; an interactive and informative forum designed for the patient, family, friends and the clinician interested in expanding their knowledge of this rare auto-immune disorder. By performing this search on Castlemans Disease and visiting our site, you have taken the initial step in participating in your own healthcare and well-being.

The Castlemans Disease website is a proprietary organization supported by medical academia, and pharmaceutical affiliates and in-kind donations. The website was originally created in 1990 as a means of communication for Castlemans patients, physicians, and family to provide medical literature, a means of communication, and research on this very rare disorder.

The concept of an interactive patient advocacy network came after my own experience with Castlemans Disease in the late 1980’s, when I was diagnosed with a mediastinal mass (1)(which was later documented as the Hyaline Vascular Variant of Castlemans Disease-HVCD or Angio-Follicular Hyperplasia). My symptoms began in 1987 when I experienced frequent bouts of reflux esophagitis. After  completion of various testing, physicians noted that a small nodule appeared on one of the L/H ribs. Further radiography (scans) determined that there was something clearly visible and a needle biopsy was ordered. Pathology reports came back inconclusive and required a tissue sample as opposed to a cell biopsy for a pathological diagnosis. Once a tissue biopsy was taken, Pathologists were able to provide a clear-cut diagnosis of Castlemans Disease (based on the “onion-shaped” design of the tumor). Surgical resection was recommended and after removal of the nodule, I have been in remission with no further HVCD complications.

Castlemans Disease was originally discovered by Dr. Benjamin Castlemans in 1954. Since that time, there have been very few attempts to research the clinical path of the disease and provide research to academics for treatment plans and ultimately new drug therapies for control and ultimately remission.

This site is intended to act as a guide for patients, clinicians and family interested in the background, research, and treatment facilities that may provide a specialized treatment plan for Castlemans patients. It is not intended to be used as the “treatment plan” for patients but merely a guide to resources for treatment, a referral base to physicians, and a real-time dialogue between the patients and physicians treating this rare autoimmune disease. Where conflicts exist between the website and clinical information, refer to your physician or the referred physician for clinical advice and treatment.

Sincerely,
Jim Johnston
Executive Director/Founder