Help please from all with Mpn’s!: Hi, I’ve been... - MPN Voice

MPN Voice

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Help please from all with Mpn’s!

Loubprv profile image


I’ve been asked to address about 60 haematology nurses and a few haematologists at the Christie in Manchester with regard to how it feels to have an mpn from a patient’s point of view.

I’d love to hear from you, but please initially ONLY send me your email address, because I have a list of questions for you which I will send.

Obviously anything you send will remain confidential and anonymous.

All comments can only help with our diagnosis, and just as importantly- our treatment.

My email address is

Please please get in touch.

A million thanks.



20 Replies

Hi Louise,

Happy to help, send me the questions.

Hope you are all keeping well. All well here.

Love Judy x

can you send your email address to Louise via private message, thanks, Maz

Just pm’d you with my email address

can you please send your email address to Louise via private message

Happy to help.

Just emailed you with my contact details.

I’m happy to help.

Loubprv profile image
LoubprvVolunteer in reply to JSKly


Please email your contact details to me!

Sent my details by email Louise hope you got them. Sue x

Details sent! X

Mazcd profile image

Please do not put your email addresses on this page, can you send them to Louise via a private message. Maz

Loubprv profile image

Hi Maz,

Not sure how people are able to message me if they don’t have my contact details ? Could you explain please......x

Loubprv profile image

Ah, sorry, you mean the replying folk!

Yes please, email me direct rather than leaving your email addresses.

Sorry Maz.

Having a foggy brain day.

Had amazing number of responses


Hi Lou

I've sneakily booked on that course as a GP/hospice medical officer so shall be in the audience to cheer you on and hopefully catch up with you on the day. Would be great if you can flag up the fatigue issues from our naughty bone marrow (even when our counts look reasonable) and the frustration of being told you look great when actually being bit jaundiced/rosy cheeked and weight loss from the illness isn't ideal! Good luck with the preparation x

Loubprv profile image

Hi Heidi!

Great, will be nice to have a fellow sufferer in the audience. Would you be prepared to stand up and say something as well?

Will look forward to meeting you.



Hi Louise, sorry this is a bit late. I too am happy to help, I have E T + Jak 2. Living in Manchester... Maggie

Ah hi Louise

Sorry I didn't see your reply. You were brilliant yesterday especially in the dreaded afternoon slots with no coffee available. Your presentation was interesting and fun and you definitely engaged the audience and fingers crossed we'll see an improvement in understanding of our condition and the benefits of the buddy system.

Sorry I didn't get to meet you personally but you may have noticed the red cheeked me sat a few rows in front of your husband. You have him well trained and hope he delivered you back to Cumbria safely.

Anyway just wanted to say congrats on a great presentation and hope the Christie team keep you well.

Thanks again


Loubprv profile image

Hi Heidi, that’s so sweet of you, thanks.

To be honest I was more focused on the chap up in the directors office who was waving at me and trying to make me laugh!

Thnaks again so much for your lovely comments.....where do you live?

I am so incredibly lucky to be a patient at the Christie, it’s a brilliant hospital.

To be honest, I think at forums and patient days we need a whole lot more patient feedback. I think the trouble with some doctors is that they think their training gives them all the knowledge they need and clearly that isn’t the case, as is so true with most illnesses.

The feedbacks from everyone which were super, came across with several key points:

1) because we look fine and our counts are ok doesn’t mean we feel fine.

2) symptoms aren’t really understood

3) the shock of diagnosis isn’t understood. Not everyone copes that well.

4) every patient is different in how they cope, and the effect that mpns have on their bodies. One hat does NOT fit all.

I’m reasonably lucky. Many people aren’t so lucky - but none of us get away Scot free, which is why I tried to get the message across that our “ normal or good day ” would be a totally well persons “feeling mildly grotty day”


piggie50 profile image
piggie50 in reply to Loubprv

Well done Louise. Xx

Loubprv profile image

Me again, Heidi did you notice if anyone took any mpn leaflets at the end of the day?

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