Hello there folks, thought I’d wish everyone a happy and healthy Myeloproliferative neoplasms (MPN) awareness day. Apparently it falls on today this year and it’s funny to feel okay about noting it at all. I hope it’s not too raw a subject for anyone reading this—perhaps we’re more than aware of what we have to live with and don’t need reminding!
I imagine many of us diagnosed with Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) like Polycythaemia vera (Polycythaemia vera (PV)), Essential thrombocythaemia (Essential thrombocythemia (ET)), Myelofibrosis (MF) and others might not have thought we would live long enough to mark the occasion of these diagnoses, or that we’d want to talk about them. I certainly didn’t in 2023 when I was diagnosed with pesky old Polycythaemia vera (Polycythaemia vera (PV)), making me think the end was nigh for me and what was the point in reaching out to others.
Anyway, to anyone who has ever offered a kind word or helped improve my understanding of surviving Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)), thank you so much. I sincerely appreciate this forum and those who share experiences here, including the amazing support volunteers and specialist nurses.
Just reading this “Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) Consensus Report” on Blood Cancer United (the new name for LLS, the American equivalent of Blood Cancer UK), which may still be of interest to other survivors of Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) despite it being US-centric: MPN Consensus Report | docresource
Thank you for posting and raising awareness of the 11th September being Myeloproliferative neoplasms (MPN) Day, also sharing your own experiences of your diagnosis.
The very lovely Dr Rubina Ahmed, our Director of Research, Policy and Services at Blood Cancer UK was interviewed and spoke on the BBC World show, last night to raise awareness of Blood Cancers. I was so pleased that she mentioned Myeloproliferative neoplasms (MPN) specifically saying they are a rare, chronic blood cancer. She highlighted the difficulties and impacts for those living with an Myeloproliferative neoplasms (MPN), saying often it is because it is ‘invisible’ to others (family, friends, colleagues).
Having one day a year to focus and shout about Myeloproliferative neoplasms (MPN) is very positive, and hopefully helps those with a diagnosis feel ‘seen’ and promotes better understanding and awareness.
Thanks for also posting the Blood Cancer United report, I hadn’t seen this before. It’s a very enlightening read as a nurse, lots for me to consider and think about, particularly around work and employment and how people with an Myeloproliferative neoplasms (MPN) are affected. Thanks so much.
My pleasure @Heidi_BloodCancerUK, I’m glad to have marked the occasion for those of us with these rare cancers, and I kind of like that it falls within the blood cancer awareness month of September as it doesn’t separate us out from other survivors of different blood disorders. Keeps the messiness of it all a little tidier, in my mind at least!
Thank you for mentioning Dr Ahmed on the BBC World show, I’ll check it out online. What great timing to have such an eminent specialist on telly, on Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)))) awareness day, no-less!
So true about Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))) often seeming invisible and it’s great to read they’re being recognised more, although of course you and your learned colleagues already support us with this so well.
You know, it can feel disheartening and dismissive of how much we achieve just living day to day with Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))) when others can give a look of “oh really you have a chronic type of cancer do you?” Thank you for seeing us @Heidi_BloodCancerUK and always being so kind. I can see why you got into nursing.
And yes isn’t that report interesting. Reading more deeply I see it might well be helpful even for some of our doctors! Thinking mostly of my first haematologist who I moan about on here regularly
It’s good to know what we could expect from cancer care, and maybe for some of us it might be motivating to seek better care.
