Having an excellent rapport with one’s GP or Specialist is absolutely essential, when living with a chronic rare blood cancer like an MPN –

MPNs, and their treatments are relatively a new phenomenon, (‘Driver’ mutations only being uncovered since 2005-2013), it is likely that medical teams will be required to work holistically together with MPN patients, as the variables between patients are often quite diverse and unique.

Chronic MPN conditions will likely require management over the rest of one’s life, and in many cases this will resemble normal longevity. Therefore, MPN patients will need to feel great comfort and reassurance coming from their medical teams… There are far too many instances of MPN patients being made to feel as if they are somehow mistaken about their conditions or symptoms. Further to this point, some of those practitioners, (out of ignorance), recommend their MPN patients to mental care. This type of ignorance and behaviour is completely unacceptable!

Part of the purpose of this website is advocate for more dedicated MPN Specialists.

Something Australia is sadly lacking in at the present…

Too many Australian GPs and even Haematologists presently remain unaware of what Myeloproliferative Neoplasms (MPNs) are, and MATES is working hard towards bringing about much-needed change in the MPN arena…

Being Our Own Best Advocates

Our GPs and Specialists will often refer to our MPN conditions via medical terminologies and jargon that are rarely ever explained in any detail, and that is when we need to become more assertive and ask them to: “Please explain, what you mean by…?” (Some of those definitions can be found on our MPN Glossary Page)

Personally, I have found it very useful to collect all of my personal blood counts (FBCs) and other Test Results, in order to make myself better understand just what they all mean, in more simplistic terms.

I have also learned the hard way that simply Googling answers and relying on over generalisations from Wikipedia is completely unwise. I do seek to educate myself but I use validated ‘Peer-reviewed’ academic articles that will stand up to scrutiny. Many of such articles will often be linked or Posted on Mates FORUM to provide a wider discussion with other MPN patients etc. 

“We MUST educate ourselves if we are to know who might best be able to assist us in our MPN Journeys…”

Seeking a More Empathetic Doctor or a 2nd Opinion

This is absolutely critical to the best possible management of our MPN’s, our health and longevity. If an MPN patient really feels that that their GP and or Specialist, (MPN doctor or not), does not listen to them or take them seriously… (?)

Then I would suggest that they seek a 2nd or even a 3rd medical opinion… By doing so, one might eventually find the right fit, and that next choice might prove to be better acquainted with all of the latest developments, when it comes to MPNs, and particularly their treatments in Australia.

If you feel awkward about doing so… Ask others on MATES FORUM about what their thoughts might be before proceeding further and perhaps this might help to crystalise the way forward…