ECD is a very rare blood cancer. It affects people differently. It started in my kidneys. I had a pseudotumor around my heart. It is inactive in my left eye-choroid part of the eye that does not appear on any scans only diagnosed by an experienced opthamologist. I was on zelboraf for about a year and then was unable to tolerate the med. After 6 months of being off the med, it came back in my long bones. I am on cotellic now and the disease is inactive. I experience a lot of fatigue and pain mostly when I get tired. I manage my symptoms with exercise and trying to eat right. I also take frequent rest breaks. I am open to anyone that wants to chat.