Hi, I'm new on here, though not to mpd - was dia... - MPN Voice

MPN Voice

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Hi, I'm new on here, though not to mpd - was diagnosed in 1988. PRV Jak2+. I seem to have lost contact with mpd forums , anyone know dates?

revfee profile image
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revfee
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Mazcd profile image
MazcdPartnerMPNVoice

Hi Revfee, welcome to the forum. Sorry but there are no more forums booked for this year, we are hoping to hold forums in new locations and again in London and Cambridge next year, I will post details on our website and on this forum. Regards, Maz.

Geoff_mpnfamily profile image
Geoff_mpnfamily in reply to Mazcd

Hi Mazcd, Does that meen that Colchester isn't in the plan now!? (For next year?)

Mazcd profile image
MazcdPartnerMPNVoice in reply to Geoff_mpnfamily

Hi Infuseme, Colchester will hopefully go ahead next year, maybe in the spring. Maz

Geoff_mpnfamily profile image
Geoff_mpnfamily in reply to Mazcd

Thanks Maz, that would b awsome.

LouisePRV profile image
LouisePRVVolunteer

Hi everyone.

I live in Cumbria and am currently awaiting feedback from Tim Somervaille at The Christie in Manchester, who is seeing Claire Harrison at St Thomas's in London sometime in October, so fingers crossed for a north west forum!

Louise

Forgive me as this is not actually an answer to your enquiry but just a message to say that I have gained hope and inspiration from knowing that you were diagnosed in 1988. There are many conflicting prognoses for our illnesses but you show that we can go on for a long time. Thank you for this new inspiration.

revfee profile image
revfee

When (and where) I was diagnosed in 1988, very little seemed to be known about the course of the disease as it applied to young people (I was 29 at diagnosis). I was told 8 - 10 years and although I had some of the associated problems (heart attacks, DVT) I have been stable now for a long time. On hydroxycarbamide, aspirin etc, but basically just get on with my life nowadays. A few years ago Claire Harrison said I have a near normal life expectancy. I aim to reach 100!

Headinthesand profile image
Headinthesand in reply to revfee

This is very reassuring for me.my husband diagnosed 3 months ago,and that is the thing he is worried about. Keep healthy

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