I have recently been diagnosed with Adult Cystinosis. My eye doctor, Dr. Sierra told me that my regular doctor will have to monitor my kidneys, and that I will have to take medicine daily. I am very confused about the Cystinosis, and very worried, my doctor still has not prescribed any medicine, nor have I had my kidneys checked. It has been three years. I cant really find any information about the Cystinosis so that I can try to self manage and not end up in the hospital. Any input or advice would be greatly appreciated. Oh yeah, my name is Maureen and I turned 50 yrs old in October.