MPN Voice
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Are MPNs more common than we think?

I attended my 3 monthly hospital appointment today and for the first time saw the nurse specialist instead of the Consultant. It was the first time I was able to relax and ask all sorts of questions, he was so nice and I didn't feel hurried at all. I asked him if he had other ET patients and he said he must see at least 4 MPN patients at every clinic and overall he guessed they probably currently have about a 100 MPN patients. I do not attend a specialist MPN hospital just the regular hospital in our nearest town.

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My oncologist only has two patients with ET.

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All I have learnt - from the Hospital Pharmacist - is that there are only 2 people in East Lancashire on Alpha - Interferon.


My understanding is that in the case of Polycythaemia Vera the chances of onset are 1 in 100,000. So that makes it a fairly rare condition. wether or not that statistic stands for all of the MPNs, I am not sure.


It's a strange thing but I have been wondering the same as 'Mallard'. I have MF which progressed from PRV, but a friend of the family also has PV; someone from work had it, and I have just heard that another friend's sister has got PV as well. A member of the family, through marriage, has just been diagnosed with ET.

In all cases apart from the one with ET, I have been able to help put their minds at rest. I was diagnosed with PRV in 1983 when I was 37.

Rare conditions - I wonder!


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