One of MATES new members has just Posted a very interesting Talk given by arguably Australia's most experienced MPN Specialist.
Ass. Prof. Dr Kate Burbury, also just happens to be the person who will lead the MPN Research undertaken when we have raised enough Funding for her to do so...
Not only is Kate most experienced in MPNs. she is also extremely optimistic about Overall Survival Rates, (by people taking better care of themselves & their various MPNs), but she also discusses a few new Trials that are about to take place 'Down Under'.
Hopefully, all of you will find this an inspirational talk full of useful information...
Thank you Annie for Posting again, and here's the Link:
Fantastic information- thank you for sharing! Very interesting that when asked if she views it as a cancer or a disorder, she said she sees it as a disorder vs. a cancer.
Personally, I also believe that MPNs are a blood disorder, as I prefer to call it, as opposed to a disease, as it is often referred to... In my view, the abnormality is caused by cell mutations, and those origins are still only speculated as to whether they are acquired and or genetic disorders...
In any event... However, the World Health Organisation (WHO 2008), settled this debate for me quite some time ago, when they declared that:
"... Myleoproliferative Neoplasms (MPNs), are a form of blood cancer because of the abnormal proliferation of blood cells due to the mutations that are causing them..." etc
Understanding what MPN conditions are does not make them any less serious an illness, we all know here just how debilitating that they are and can be...
...Indeed, they alter our Quality of Life (QoL), and making living very difficult indeed... they can of course be fatal...
In my view... I found that comment by Dr Burbury a tad unhelpful, and really requiring greater qualification on her part... I will be making that point to her myself in due course...
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Energy costs and inflation going through the roof and now the NHS finally gone to pot!!
Specialist 2nd visit 
Anyone have high mole count (>50)? Possible connection with non-driver mutation 
