Hear from people who have been directly impacted by MPN. They recount how they were diagnosed, provide details of their treatments and tell us how they felt on their journey. If you would like to share your story here please send us a message via the MPN AA contact email: mpnaa@mpnallianceaustralia.org.au.
The information shared by individual patients is their own personal story, and MPN AA does not endorse the use of any particular supplements or treatments, other than those prescribed by a treating haematologist or GP. Patients should always check with their doctor before starting on any therapy, including an exercise regime.
Sarah is a young mum who was diagnosed with an MPN during the Covid-19 pandemic.
This is her story.
Linda’s story. In September 2022 Linda was having some dizzy spells and having follow up blood tests for low iron levels. Her haemoglobin result was very low and she was immediately referred to hospital for a blood transfusion and was referred to a haematologist.
This is her story.
Frank was diagnosed with polycythemia vera in 2016 and has recently progressed to post PV myelofibrosis. His diagnosis and treatment spans both Australia and New Zealand and was very much impacted by COVID.
This is Frank’s story.
Libby was diagnosed with polycythemia vera (PV) in 2016 but has also had to combat osteoporosis and breast cancer.
This is her story.
Diagnosed with an MPN like illness at age 15, Tereena’s story is one of courage and optimism. Her MPN progressed from ET to PV to MF and finally to AML when she had a stem cell transplant.
Her story is extraordinarily heartwarming and such an important one for all MPN patients and their carers and families.
This is Tereena’s story.
Sharon McIntyre was diagnosed with an MPN in 1991 when only 18.
She now has myelofibrosis and is searching for a suitable stem cell donor as she may need a transplant at some future stage.
Read Sharon’s story »
Nathalie Cook feared she was having a stroke before being diagnosed with essential thrombocythemia (ET).
Read Nathalie’s story »
Doreen Donaldson was diagnosed with polycythemia vera (PV) in 2013. She tells us about her diagnosis, treatment and hopes for the future.
Read Doreen’s story »
Chris Donaldson never expected to have an MPN as part of her life journey. She was referred to a haematologist due to her increased levels of basophils, eventually leading to a diagnosis of Primary Myelofibrosis.
Read Chris’ story »
Heather Hughes has essential thrombocythemia (ET) with the JAK2 gene mutation and was diagnosed in February 2016. She provides tips and advice for those newly diagnosed.
Read Heather’s story »
Matthew Hicks, a fit and active 46 year old, was admitted to Hospital Emergency after having a heart attack. Nine months later Matthew was diagnosed with Polycythaemia Vera.
Read Matthews’ story »
Kathy Thomas underwent a stem cell transplant (SCT) in 2014 and is now four-years post SCT. She was initially diagnosed with ET at the age of 24 and progressed to MF in 2006. Kathy talks about the things that helped her to cope mentally and physically with the SCT procedure and recovery.
Initially doctors thought Jennie Wigginton had essential thrombocythemia (ET), but after further investigation she was diagnosed with myleofibrosis.
Read Jennie’s story »
Tracy was diagnosed with essential thrombocythemia (ET) in 1990. Here she provides some unique insights into her 26-year journey with MPN and tells us how it has affected her life.
Read Tracy’s story »
Sam was diagnosed with polycythaemia vera in 2002 after many years of symptoms.
Read Sam’s story
Ken was diagnosed with polycythaemia vera well over 20 years ago. He has been an advocate for MPN patients for almost all of those 20 years.
Jenny Shepherd was diagnosed with polycythaemia rubra vera (PRV) after a blood test. She explains more about the support she has received and the impact PRV has had on her life.
Read Jenny’s story »
