My husband passed away 3yrs ago. He was also diagnosed with the same thing.His problem was that he was adopted and had no idea of his family history.The symptoms are so vague. He discovered it because he had adema in the feet for some time and the dr did blood work and called us and said there is something wrong,Jim is loosing blood somewhere and he needs to see a blood specialist. Well, one thing led to another. He was sent to a endo whatever (stomach ) and started to do different tests,he had a liver biopsy,and a bone marrow test. And yes it does affect other organs,Jim had syrosis of the liver also, and it affected his splein,and bone marrow. Had he known years ago he could have lived a relativly normal life with the routine blood letting, but it was awfully hard for him to have his blood count high enough that he could have the blood taken from him. It also causes toxins to build up in your brain,because your liver cannot filter them out,thus causing your thoughts not to be clear, and sometime to a point of dilusional. All this could have been avoided also, if dr's would add this simple test to a routine blood work up. The internet is a very good source of information for the disease. I also took a little recorder with me when we went to the dr's cause it is so overwhelming and you can't possibly take all the information in and ask questions that you want to. Also if you have siblings or kids they also need to have the blood test done. My husband was not able to drive because of his mind not being what it should and his reflexes,etc. He also became very week, very lathargic,lost weight,was dizzy and had to use a cain or be assisted by me. I probably have given you more information than you wanted,and I hope I have not scared you. My husband or I didn't discuss death,but we both knew. Towards the last,he fell (outside the hospital) and broke his hip and he had to have surgery and he never was able to rally from that. He just didn't have the strength, he fought for awhile,but it was just to much for him with every thing else going on. I would be glad to e-mail you again if you wish.