- Diagnosed with MPN – Polycythaemia vera

Raewyn's story

From the time that Wellington resident Raewyn Moss’s routine blood test came back abnormal to getting in to see her GP – she knew that her doctor was going to diagnose her with polycythaemia vera.

After Raewyn went in for her second round of testing in May of 2014, she began to have an idea of what was going on in her body.

“You get to the blood test place, and they go; oh goodness, this has to go on the urgent courier! At that point, you wonder, what kind of tests am I having?! Of course, then you get back to work and start to google the tests.”

Polycythaemia vera is a form of myeloproliferative neoplasm (MPN). There are two other types of MPNs, essential thrombocythaemia and primary myelofibrosis.

While Raewyn had experienced general symptoms such as fatigue, headaches, and even itchiness before her diagnosis – she classically just put them down to having a busy year. Additionally, as a very active individual, she found her passion for tramping became increasingly difficult.  To begin her journey, she underwent venesection treatments (which follow a similar process to drawing blood) to address her high haemoglobin levels.  It was only after she started to feel normal again, did it click that something had been wrong.

 “I got my perkiness back, and I’m like oh crikey that was clearly what it was.”

Initially, Raewyn was able to be treated with a combination of aspirin and venesections. After about a year, though, her condition changed, and that was when her doctor recommended she try a mild chemotherapy drug known as hydroxyurea.

“Up until then, I kind of just thought that I had a blood condition; that it was nothing to worry about. Hadn’t done a lot of research into it, to be honest, but when someone tells you that you have to go on a chemotherapy medication, you start to take things seriously all of a sudden.”

To find more information on her condition and treatment options, Raewyn began to investigate international advocacy channels, specifically in the United States, the UK and Australia. Since then, working with her haematologist, Raewyn has been instrumental in getting MPNs listed on the New Zealand Blood Cancer Registry.  Additionally, she has applied to Pharmac to fund alternative drug options for those living with an MPN.

Raewyn first reached out to LBC in 2018, when she was organising a seminar for Kiwis living with an MPN. From there, she joined LBC’s Consumer Advisory Board in 2019.

“People think of blood cancer, and they probably think of leukaemia. It is really easy to think of it quite narrowly. When you start to explore it, you realise that it is a bit more than leukaemia, lymphoma, myeloma etc. MPNs were still quite underrepresented.”

Since becoming involved with LBC, Raewyn says she has seen the number of services the organisation offers patients grow and expand. She highlighted the webinar series held during the lockdown in particular, as they provide access to information on various topics that can be re-visited at any time.

Looking to the future, Raewyn hopes to see the access to haematological care spread throughout rural New Zealand. Since most haematologists are based in the larger cities, it leaves those living in other areas of the country in the dark regarding education on their diagnosis. Access to up to date medical information is vital – especially for those living with conditions that may not get the exposure that others do. That is why she says initiatives such as LBC’s that provide essential information to GPs and public health nurses are so important.

“As long as we are supported through agencies such as LBC, we can lead a relatively normal life. We can still continue to give back and contribute to society – possibly even in ways that other conditions can’t.”