Hi everyone, I am here for by brother who is 40 years old and was dx w/ECD in March. He was having problems breathing for over a year before they did a scan and found a mass in his lungs. He was at first dx with lung cancer but after the biopsy they said it was ECD. He has extreme leg pain, severe headaches and his vision is starting to go blurry. We live in the suburbs of Chicago and cannot seem to find any Doctor who knows or understands this disease. His lung specialist said he needs to go to Mayo but his Insurance is refusing the referral. He has not been given any type of treatment because they do not know how to treat him and they have not even given him anything to control the pain. I feel lost. Does anyone have any advise or ideas on what we need to do? The Medical Director of the Insurance company is stating he needs to see the Hematologist that misdiagnosed him to see If the disease is hereditary, I do not understand why that matters at this time he needs medical treatment not genetical testing. Any advice would be greatly appreciated. Thank you~