Mpn forum

[Captaincorbett]

Hi all my names Wayne and I'm new to this site , I attended the meeting in London at guys yesterday , I was quite nervous but so glad I went ,

[mhos61]

Hi Wayne and welcome,

I really wish that I could have attended. I have heard so many good things about these events. I will definitely attend one in the near future. It will be so nice to put faces to names.

Which MPN have you been diagnosed with?

[Captaincorbett in reply to mhos61]

Jak 2 😍

[AndyT]

Hi Wayne - welcome on board - MPNs seem scary at first but many of us have been living with them for a long time with relatively few complications - I use this forum and the MPN Voice website for information, advice and support - they are a great help in keeping yourself informed..!.

[Paul42]

Hi Wayne

Welcome to forum, its a great place for information. Have you been recently diagnosed? Jak2 isnt actually an MPN its a form of mutation that can cause an MPN to develop.

The most common 3 MPN's are polycythemia vera (PV) which is usually an over production of red blood cells, essential thrombocythemia (ET) which is usually an over production of platelets and myelofibrosis (MF) which is usually an under production of red blood cells/platelets etc. There are others and often some people end up with a bit of a mix of more than one.

I have the Jak2 mutation and have PV, 95% of PV patients have the mutation but with the other two it is somewhere around the 50% mark.

As Andy has said there are a lot of people living really well with the conditions, and can answer many questions you may have.

Paul

[Captaincorbett in reply to Paul42]

Sorry yes I have et

[Captaincorbett in reply to Paul42]

Cheers paul

[Twinkly]

Don't be shy ! It's so good for you to talk ! We are all paddling along in the same boat just trying to make our way in a choppy sea.. Just good to know when you feel tired there's someone to hold you up .. Twinkly. Xx

[Captaincorbett in reply to Twinkly]

Aw thankyou x

[Captaincorbett in reply to Twinkly]

Thanks twinkly x

[Mazcd Partner MPNVoice]

Hi Wayne, it was lovely to meet you and your lovely wife, thank you both for coming to the forum, glad that you enjoyed it. Maz

[Captaincorbett in reply to Mazcd]

Was nice to meet you to maz

[Phelpsy]

Hi Wayne welcome to this wonderful forum , as you can see the people on here a very helpful & supportive , So don't hesitate to voice your concerns & thoughts , there's always someone here to help .

I also have ET jak2 positive dignossed overt 3 years ago now ,

I'm hoping to attend a meeting in near future , I've taken part in the online live meetings I would recommend them,

It's great to gather as much knowledge as possible im still learning after 3 year ,

Take care

Pam X

[Captaincorbett in reply to Phelpsy]

Thanks pam x

[nivana]

Hello Wayne and welcome

I haven't been to a forum yet, but hope to atttend one in the future. I am sure you will find this site so very useful and informative.

[ourlife]

Hi Wayne,

I was overwhelmed by the first forum I went to, welcome to the club.

Have fun,

Ourlife