susanashephard (@susanashephard) published a blog post · August 22nd, 2011
Living With Myelofibrosis (Part 1 of a 4 part-series)
I’m writing this blog series to help others by giving you a glimpse into how I have been impacted by myelofibrosis yet still consider myself to be blessed with a very happy and fulfilled life. If you are a fellow patient, perhaps you have learned much of what I have along the way. If you are recently diagnosed, some of the things I’ll relate may be new to you. My hope is to share a few helpful new ideas with you regardless.
For now, let me give you a brief overview of my journey:
The symptoms of Polycythemia Vera (PV) appeared gradually between age 38 and 40. At about age 51, my diagnosis changed to something which often follows Polycythemia, called Myelofibrosis (MF). You could think of PV as the “prolific phase” and MF as the “spent phase” of the same disease process, although sometimes one’s initial diagnosis might be Primary MF with no PV to precede it. There is nothing totally predictable about this disease – everyone’s experience of it is a bit different. Regardless, both PV and MF are in the same family of Myeloproliferative Neoplasms (MPN).
During the time of my initial diagnosis, PV was considered to be an orphan disease. There were no treatments specifically designed to address it, and there was little focus on research of the disease. Partly due to the efforts of a very vocal and organized group of patients who inspired doctors and researchers to help us, some promising insights have now been gained. The JAK2 discovery has already led to new disease-specific drugs and doctors have gained additional understanding of how the disease operates.
So what does this look like from a patient’s perspective? Well, in the entries that will follow I’ll be sharing how it began. Then I’ll give an overview of the diagnosis phase and the treatments I had as the symptoms changed over time. After that, I’ll talk about what‘ve learned about being my own advocate. Lastly, I’ll share the complementary practices which have enhanced my Total Health: Body, Mind, and Spirit.