My story with ET began in 2003 when I was just 33 years of age. The diagnosis was made after a blood test was taken to investigate a skin problem I was suffering at the time. I was referred to a haematologist who was quite surprised as he had never seen an ET patient in my age group. I was put on aspirin and the haematologist told me that when my platelet count reached 750,000, I would be required to start Hydroxyurea. I reached this count within 6 months, but as I was not suffering any symptoms, I was not prepared to start medication and I sought a second opinion. Luckily I was then told that I did not need to start treatment purely based on counts, but the new haematologist explained that treatment would be based on symptoms and thrombosis risk. This made sense to me and as I did not have any symptoms, I continued life without any concerns. However, this changed in 2006 when I ended up in the emergency department with a Transient Ischemic Attack (TIA) like event. Shortly after this I started developing very bad headaches, which could not be controlled by any type of standard painkiller. In 2009, I started Hydroxyurea and experienced some relief in my continuous headache. My quality of life improved and life went back to ‘normal’, until September 2013, when I ended up in the emergency department again. I was placed on stroke watch for a few days and was struggling with the increased pain levels I was experiencing. After I was released from hospital, life changed in a significant way for me. My headaches had become worse and I was struggling with blurred vision, severe fatigue and an overall feeling of weakness all the time. My quality of life was badly impacted and I struggled to live a normal life due to the pain I suffered. It was around this time, I started reaching out to other patients to find support and understanding. This is how I met the wonderful people I now know as my MPN Alliance Australia colleagues. Comparing our MPN experiences we discovered that most of us struggled in many different ways but the path to diagnoses and acceptance was similar. A lack of relevant and up-to-date MPN information and understanding, was one of the common struggles we all faced. We therefore agreed that there was a necessity for better MPN resources, patient advocacy and more MPN research, and we formed the MPN Alliance Australia in 2015. Although living with an MPN is not easy, I am grateful for the friendships ET has given me and am happy to see that some of the small achievements the Alliance has worked on, have somehow enriched the lives of other patients.
NOTE. Jolanda’s presentation to the European Haematology Association in 2016, as well as her speech to the Adelaide fundraising dinner is HERE.