It is now 20 years since I was diagnosed with Polycythaemia Vera. I had never heard of Myeloproliferative disorders – I even had to ask the oncologist how that was spelt. Like many, I took to the search engines and quickly realised that there was little Australian based information. I set out to rectify this situation by establishing the MPD-Oz email list in September 1998 which currently has 182 subscribers. I have had a long and productive association with the Leukaemia Foundation since 2000 with many MPD-Oz list members contributing to the first edition booklet on Myeloproliferative disorders. Based on this long association with the LF I have become an MPN AA volunteer to promote wider understanding of these rare diseases, to support patients and carers and to find treatment that will one day cure these blood cancers.
See Ken sharing his MPN story at the 2017 Australian MPN patient conference.