My husband was diagnosed with MDS in 2009. According to the Revised International Prognostic Scoring System he was intermediate risk, prognosis 6 years. We got five before it progressed to Acute Myeloid Leukemia (AML) and after all the chemo possible he died of infection. Both being doctors, we spent hours on the internet to answer our questions. At some point, when his graphs were just all going down, he just stopped. The more we know, the less we fear. A very fine balance to know enough not to be overcome with hopelessness.
There were no support groups in the western cape for families of MDS patients and I hope to still start them if there are other who are as lost as we were. Websites are eager to give you more information on anything but the real life questions: how long can you still work without being too exhausted? Where can you go on holiday without fear of infection or needing a transfusion? If you have questions like these, I can only answer what we experienced and how it impacted on our lives.