The MPN AA is run by MPN patient volunteers.
Nathalie Cook
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.
Sue Taylor
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.
Ken Young
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.
Jenny Myers
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.
Charlie Nicholson
Back in 2011, I visited my GP for a general check-up. At the time, I was given the all-clear – only now, after a diagnosis of post PV – myelofibrosis, I discovered my blood test results were abnormal even then. My haematologist looked at those results and saw my numbers were already amiss. Had I been referred then, I would’ve probably been diagnosed with PV and treated. Instead it sat in me, undiagnosed, for a decade.
Despite high counts I was asymptomatic and busy raising my children, I continued to live a full life on the outskirts of Adelaide. I returned to my GP five years ago with gynaecological issues, my blood tests again delivered abnormal results – anomalies that were assumed to be a lab error.
With nothing else found, I put symptoms I was now experiencing – including extreme fatigue, intense headaches and hot flushes – down to a combination of perimenopause and stress.
After a fall at work resulted in a haematoma from hip to knee, I headed to the emergency room, only to be sent home without a blood test. When a resulting elbow injury blew up all the way to my armpit, my GP was alarmed enough to order complete bloodwork. The resulting blood counts led to a referral for an urgent hospital appointment – a referral that was then lost in the system.
Over the following weeks, I had began to actively advocate for myself as I struggled to receive answers. Eventually contacting a private haematologist, I began a process that resulted in a diagnosis of post-polycythemia vera myelofibrosis.
I am currently taking part in a clinical trial that combines two palliative drugs. I hope to become a suitable candidate for a stem-cell transplant. In the meantime, I am focused on appreciating every moment of life with my husband and children.
This diagnosis has been a huge learning curve and I found that advocating and educating for myself and the MPN community has been key to accepting and dealing with my diagnosis.
In 2022 my family and I decided to start fundraising and to date have raised over $30,000 for the Leukaemia Foundation. I have participated in patient story and patient webinars with the Leukaemia Foundation and have also founded a local support group based in South Australia.
I was invited to be a patient representative for MPN Optimal care pathways both for health care professionals and patients, undertaken by the Blood Cancer Taskforce.
I accepted the invitation to join the MPN AA team in February 2024.
Michelle Nelson
I was diagnosed at 51 years old, in October 2017, with Essential Thrombocythaemia (ET) after a routine pre-surgery blood test identified high platelets and a subsequent blood test the Janus Kinase 2 V617F (JAK2) mutation.
As I was not provided with any information about ET when diagnosed, I searched for information so I could understand the disease and its impact. Fortunately, I found some highly reputable websites that published materials from the leading MPN practitioners in the world, e.g. Ruben Mesa, and several (well administered) Facebook groups including the MPN Australia and NZ Myeloproliferative Neoplasm Support Community and MPN AA.
A diagnosis can be overwhelming, therefore improving easy access to quality information to inform an accurate and realistic understanding of what to expect and the options for treatment and supporting quality of life is essential. For me, knowledge reduces anxiety and uncertainty, as it is better to deal with the known, than the unknown.
Consequently, I accepted the invitation to join the MPN AA team in January 2025 to assist with identifying and providing information that will help others to access the latest information about MPN to improve patient outcomes.
Sharon MacIntyre
I was young in 1991 when I was diagnosed with MPN [polycythemia rubra vera (PV) and essential thrombocythemia (ET)] at the age of 18 but I believe my first symptoms started many years earlier, when I was at primary school. I am now 50 and have progressed to myelofibrosis (MF). I live on Brisbane’s northside and am a mother of three healthy children.
I have a great passion for helping women with MPN, especially those diagnosed in childhood. I bring to the MPN AA Team my insights of going through teenage years and the social difficulties my MPN gave me, young married life difficulties with pregnancy and child birth, working life/career having to always work part-time and now in peri-menopause.
Sharon’s story featured in the Leukaemia Foundation’s 2021 newsletter – see link below.
Sharon has also been interviewed on ABC radio to raise awareness about the need for stem cell donors and her own quest for a donor.
