The MPN AA is run by MPN patient volunteers.
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.
I was diagnosed with essential thrombocythaemia (ET) in 2008 and in 2010 my diagnosis changed to polycythaemia vera (PV). Although I had worked as a health professional for over 20 years (currently as a dietitian and previously as a nurse), I had never heard of myeloproliferative neoplasms (MPN) and an internet search showed limited information was available on MPN at that time.
I soon joined the Australian MPN-Oz and US-based MPN-Net email ListServes, where others with MPN kindly shared their knowledge and experiences, helping me feel less alone. In 2011 I attended the Mayo Clinic MPN conference in Arizona, where I learned about a clinical trial that showed the slow acting form of interferon Pegasys®, was effective in controlling blood counts and reducing the JAK2V617F allele burden in MPN, and was better tolerated than the original form of interferon, Roferon®. At that time, Pegasys® was not available on the Pharmaceutical Benefits Scheme (PBS) for MPN and it’s ‘off label’ cost was too expensive for most patients to afford.
Over the next several years I travelled to medical conferences and advocated for MPN patients with Roche and the Government, asking for the PBS listing for Pegasys® to be expanded to include treatment of MPN. This led to Pegasys® becoming available on the PBS for MPN on 1 August 2018, in Australia’s first consumer-led PBS drug listing. This was also the first government approved Pegasys® listing for MPN to occur worldwide!
Since 2013 I have volunteered with the Leukaemia Foundation by writing articles for the Foundation’s patient newsletter MPN News, presenting at patient conferences and advocating for people with MPN. I also work as an Accredited Practising Dietitian (APD) in Community Health in Melbourne.
In 2016 I become a volunteer member of the MPN AA because I believe that as a committed group of MPN patients working in partnership with the Leukaemia Foundation we can increase community awareness of MPN, raise funds for MPN research and help provide accurate and up-to-date information for people living with MPN and their families.
More information about Nathalie’s story is available HERE.
In mid 2013, I was diagnosed with JAK2+ ET, through routine blood tests. At that time I was not aware of any symptoms, and was otherwise fit and healthy. The diagnosis sparked an intense curiosity to find out more about these rare diseases. I have since joined a number of online support groups, both overseas and in Australia, and have tried to resurrect my rusty knowledge of statistics and genetics to better understand research articles on the subject. I feel strongly that Australian MPN patients need access to best practice in diagnosis and treatment. I have joined the MPN AA team to help through raising awareness and funding for research, and in assisting patients to feel less isolated with their diagnosis.
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.
I was diagnosed with Polycythaemia Vera (PV) in December 2014 at age 57 following a blood test after having unexplained weight loss. At first, I felt shocked and rather anxious about the future. I spent those initial quite surreal weeks having weekly venesections and blood tests. Although I told family and friends about my diagnosis, it was difficult to explain it clearly or the implications for the future.
I began searching for information about PV on line and had trouble finding Australian information.
Having such a rare disease meant I felt quite alone. As time has gone on, I can see that I needed more support in the early months but as I don’t like to use social media, I wasn’t aware of the online support available.
Fortunately in March 2018, at a presentation in Sydney by Professor Ruben Mesa, a Myeloproliferative Neoplasm (MPN) expert from the US, I met a representative of the MPN Alliance Australia (MPN AA) who also has PV, as well as another PV patient from Sydney. It made a huge difference to meet other patients who understood what I was going through and who had much more knowledge, lived experience and information to share.
The MPN AA member sent me a suite of information about PV and the range of Australian support that was available, mainly on social media. I had not been aware that the MPN AA existed, nor that it had a website and Facebook support page, nor that Ken Young had been running an email support list for many years, nor that Josie Muller’s wonderful MPN Australia and New Zealand myeloproliferative neoplasm support community is also available to MPN patients. I have found these resources invaluable and am especially grateful to my team members in the MPN AA and all those MPN patients who share their experiences with the MPN community.
If you are newly diagnosed or do not know about support available in Australia, including how to meet other MPN patients, I believe you will find this MPN AA website to be a treasure trove of quality MPN information.
Finally, what has helped me considerably in coping with my PV diagnosis is just ensuring that I am getting out a great deal and enjoying life, especially spending time with my family and four precious little grandsons.