Cleveland Clinic does have a great explanation of the disease. This is what I sent to my kids so they would understand what I was going through when it started back in September. I'm working with a hematologist. I'm really interested in exploring information regarding diet as well. I try do a lot of online research. It mostly tells you what it is and the typical protocol most are following, but it's pretty rare and still not a lot of treatment information out there. There are a lot of clinical trials happening and that's encouraging.