Thank you MPN Voice! Where are you from? - MPN Voice

MPN Voice

10,431 members14,370 posts

Thank you MPN Voice! Where are you from?

JT_Marlin profile image
99 Replies

I’ve been on this forum for two days and it’s trult remarkable how amazing it is to be able to share and connect with others going through something similar. Thank you all! And thank you MPN Voice!

I see the site is UK based - where are you all from? (That is if I’m not not breaking any blog protocol?!)

I’m Boston, MA.

Written by
JT_Marlin profile image
JT_Marlin
To view profiles and participate in discussions please or .
99 Replies

Hutt Valley New Zealand

piggie50 profile image
piggie50

You’re right, MPN Voice and our amazing Maz are brilliant,

I’m in Devon, south West England.

Mazcd profile image
MazcdPartnerMPNVoice in reply to piggie50

thank you Judy, that's really nice. Also living in Devon.

Hat3 profile image
Hat3 in reply to Mazcd

I moved to Devon from East Sussex last August so have been negotiating different health authority/hospital etc. Would love to meet up with any locals. I'm not far from Cornwall too.

Otterfield profile image
Otterfield in reply to Hat3

Dorset, so not far away. I am also so grateful for the support on this forum.

AngiP profile image
AngiP

I'm in Beverley, East Yorkshire

Frankyboy profile image
Frankyboy in reply to AngiP

Me too, be great to meet up. Not sure how to private message.

Wyebird profile image
Wyebird in reply to Frankyboy

I don’t know how to private message either. Maybe you could use messenger

mhos61 profile image
mhos61 in reply to Frankyboy

Hit on the user name of who you want to contact. Then at the top of the page, left of the HealthUnlocked heading are four symbols. Hit the third one (speech bubbles), and this will allow you to private message.

Mary

Wyebird profile image
Wyebird in reply to mhos61

Got it thanks

AngiP profile image
AngiP in reply to Frankyboy

I don't know how to private message from here, but if you go onto facebook you can use messenger

Tico profile image
Tico

I'm in west bromwich, west midlands. Uk.

Tico profile image
Tico in reply to Tico

Wow, some of us might be thousands of miles apart, yet at the same time all so close together if you know what I mean... tina.🤗

JojoWonder profile image
JojoWonder in reply to Tico

Boing boing! My Husbands a huge Baggies fan. I’ve spent many an afternoon at the Hawthorns... of course you might not be a fan 🤣⚽️

Tico profile image
Tico in reply to JojoWonder

Hi jojo. Are you from west brom or the surrounding area? Tina.🤗

JojoWonder profile image
JojoWonder in reply to Tico

I’m not. I’m from Cardiff but my Husband grew up in Birmingham, came to University here and stayed. His whole family are massive Albion fans so I’ve become an honorary Baggie. Excited to be top of the league right now 😬

Tico profile image
Tico in reply to JojoWonder

Just seen your from cardiff, does your husband have a connection with west brom being as he's a big baggies fan? P.s. I only really have an interest in football when the World cup or the Euro's come around.

Osteomyelio profile image
Osteomyelio

Florida

I’ve learned so much from this forum

mhos61 profile image
mhos61

Good Morning from Robin Hood County, Nottinghamshire!

MPN Voice and this forum have made living with a rare blood cancer so much more bearable.

Thanks Maz, all the behind the scenes staff, and our lovely forum members. 🤗🤗💕

Daisy-May profile image
Daisy-May in reply to mhos61

Hi just seen your post I'm quite new here I'm in Robin Hood country Nottinghamshire..

Swede profile image
Swede

NW Manchester, UK

amhann profile image
amhann

I agree, we have a fantastic support group here. Anne-Marie (South Yorkshire UK).

Wyebird profile image
Wyebird in reply to amhann

I’m south Yorkshire near Doncaster hi x

linphy profile image
linphy

I'm in Worcester, Worcestershire. MPN has been helpful for me ❤️

Tylerdog1 profile image
Tylerdog1

I’m in Kent - the garden of England

linphy profile image
linphy in reply to Tylerdog1

I originally come from Kent, I lived in West Kingsdown. I have family that still live in Kent

RobPV profile image
RobPV

I'm in Kilmarnock, Scotland.

EleanorPV profile image
EleanorPV in reply to RobPV

Nice to hear someone from

Ayrshire. I’m originally from Stevenston. Now in Aberdeen. Scotland.

Cookiebaker profile image
Cookiebaker

Iowa City Iowa USA

Jschwab profile image
Jschwab

Wisconsin USA-

Nice to meet you!

JT_Marlin profile image
JT_Marlin in reply to Jschwab

If you work for schwab - lets talk!

milw532 profile image
milw532 in reply to Jschwab

Am from Wisconsin USA as well. Do you have any recommendations as to specialist(s) to see locally? Have ET and feel getting a second opinion would be beneficial.

Jschwab profile image
Jschwab in reply to milw532

I have heard Dr. Mike Mullane is someone who specializes in this.... There is a list of specialists in the area. I will look for it and send to you... happy to hear I have someone close!!

Elizka profile image
Elizka

California

saturn0325 profile image
saturn0325

I'm in Taipei, Taiwan.

JT_Marlin profile image
JT_Marlin

I’m blown away by this forum and the people who make it what it is.

I know we’re all going through our own situations but the unity and acceptance is like nothing Ive experiences before. For whatever it’s worth ....Thank you all.

socrates_8 profile image
socrates_8

Sydney Australia JT_Marlin... 8-)

Steve

Deefen profile image
Deefen

Brisbane, Australia

huisiebydiesee profile image
huisiebydiesee

Western Cape, South Africa

Shirley

LottiSz profile image
LottiSz

I live in Hungary (a small European country in the middle of nowhere). This forum is a lifesaver and knows more about anything than my Dr Blood. Thank you, everyone. :)

Bazzak profile image
Bazzak

Pimlico London

Minu68 profile image
Minu68

Diagnosed 3 weeks ago, this forum has been fantastic, informative and so helpful in trying to understand this condition. Thank you all on here, and especially those who give time and attention to monitor and run the forum....is that just you Maz??

I'm in Leeds,West Yorkshire, UK :)

Maggie-ol profile image
Maggie-ol

Hi, I'm in Leeds in West Yorkshire

JojoWonder profile image
JojoWonder

I’m in Cardiff, Wales 🏴󠁧󠁢󠁷󠁬󠁳󠁿

swimswam profile image
swimswam

I’m in Nottinghamshire , near the Nottinghamshire, Lincolnshire border.

Deece profile image
Deece

Cardiff South Wales

goodluckjoe profile image
goodluckjoe

California, USA

Cassie11 profile image
Cassie11

I'm from Leicester, East Midlands of UK.

Ebot profile image
Ebot

London! Love the way technology shrinks the world.

Timjonze profile image
Timjonze

South London these days (Forest Hill) ... love the forum and all the people on it

Simris profile image
Simris

Hi JT,

Agree this is brilliant forum.

I'm Northern Ireland and would be absolutely delighted to meet anyone else in my neck of the woods. Very lonely having ET and having someone I can chat with face to face would be fabulous!!!!!!

Love Phyllis xx

Snagglepus profile image
Snagglepus

Great Amwell Hertfordshire.

Bears23 profile image
Bears23

US, Ft Lauderdale, Florida

Stevesmum42 profile image
Stevesmum42

Tottaly agree. We have the kindest and most empathetic people on this incredible site. Always there to listen, advice, understand and help where possible. It’s a group of friends in the same situation as yourself who know how you feel, and experience those feelings themselves. Thank you Maz and all who make this site the lifesaver it is Sandy x

Stevesmum42 profile image
Stevesmum42 in reply to Stevesmum42

Whoops I’m in Devon.

Bridie123 profile image
Bridie123

Milton Keynes, approximately 50 miles from London uk 🤗

gemneye profile image
gemneye

California

JojoWonder profile image
JojoWonder

Anyone want to do a house swap? Kind of like Kate Winslet and Cameron Diaz in the film The Holiday?

California, Florida & Sydney - I’m talking to you...🤣

Tico profile image
Tico in reply to JojoWonder

And me! 🤣🤣🤣

Wyebird profile image
Wyebird

I’m from the Uk

Zanzibi profile image
Zanzibi

I also am relatively new to the site and most grateful for it and all the people with calming, helpful thoughts and generosity in sharing experiences. I am from the US - Maryland.

slatertiler profile image
slatertiler

Chesterfield England

hunter5582 profile image
hunter5582

Harpers Ferry, West Virginia - USA

azaelea profile image
azaelea

I'm from North Yorkshire on coast. I agree this forum has been a lifeline since I found it in Sept.2018 when diagnosed with ET. Thank you Maz and administrators for uniting us globally! Fran

Lena70 profile image
Lena70

Fayetteville, Arkansas

Originally from New Orleans, LA

monnywese profile image
monnywese

This site is such a big help! I live in New England USA, but spend part of my year in Oxford UK - family there.

Judypinner profile image
Judypinner

Judy from Pinner, Middlesex. This forum is wonderful .

Maz too.

Mica11 profile image
Mica11

From Edinburgh but live in Aberdeenshire, Scotland.

Cja1956 profile image
Cja1956

I love Boston, I went to college there but I'm from Florida, born and raised.

And, yes, this site is remarkable! I joined a year ago and it has been, literally, a life-saver.

Threelions profile image
Threelions

London 👍

Mag46 profile image
Mag46

I'm in Newton-le-Willows. I'm new to this site but have had PV for 13 years. It's been a real tonic to know I'm not alone, great advice as well!

Lab-Rat profile image
Lab-Rat

Gauteng, South Africa

Pauline43 profile image
Pauline43

Hi - I’m in Sheffield, South Yorkshire, England

Sabramcq profile image
Sabramcq

In Kansas City. I just had a physical EVERYTHING normal and dull EXCEPT platelets 566. Now I’ve been referred to a hematologist. They sent me some paperwork and the hematologist is in the cancer center. Scared. I even had an abdominal al ultrasound. Again, normal. The doctor who aids my physical said nothing about cancer. So I’m undiagnosed. Maybe my next blood test will be normal. Looking for answers now.

JT_Marlin profile image
JT_Marlin in reply to Sabramcq

I know exactly how you feel. Likely you’ll start on a daily baby aspirin and have a lot of blood drawn for a variety of tests.

Apparently elevated platelets can just be a sign of stress too so it really may be nothing at all.

Keep us in the loop.

SilverET profile image
SilverET

Hi JT_Marlin,

I'm from Australia. Seems like MPN voice in the UK is the largest forum around for MPN's but we do now have a new one started in Australia called MPN Mate that Socrates_8 (he replied to you above) started. It's small so far but another good site. He has out up a bit of stuff on the latest research that relates to MPN's and trials of drugs etc. Well informed. He is also trying to raise awareness of the disease in Australia as it is almost not known about here in Australia with very few drs even knowing what it is. Seems like the UK is well out in front on this topic.

Anyway welcome to the gang and please feel free to check out MPN Mate. It is nice to share with others like yourself and have a place to ask questions.

SilverET

pvgirl profile image
pvgirl

Bloomington Illinois- USA

Rae25 profile image
Rae25

I live near Birmingham, England

Inca profile image
Inca

I am France,Southwest...P V nearly 12 yrs,this great site keeps me sane,as it's such a lonely disease,can connect with people similar.

Mamab83 profile image
Mamab83

Georgia! Even though I’m not UK based, this is my favorite site for ET info. A lot of others are more negative

Marossi profile image
Marossi

Switzerland

Avamia94 profile image
Avamia94

Near Accrington, in the UK.

Mazcd profile image
MazcdPartnerMPNVoice

absolutely amazing that this forum brings us all together. Maz

Gordonek profile image
Gordonek

Originally from Ayrshire Scotland but now live between Glasgow Scotland and Dmosin Poland

rkhabtec profile image
rkhabtec

Belvidere Ilinoia USA

Dovme profile image
Dovme

Altan from Berlin Germany

Everyone on here is amazing! It’s given me such a boost

ChrisAnnSen profile image
ChrisAnnSen

West Dorset here

Nmom profile image
Nmom

Seattle WA here! My 17yr old son was diagnosed in Nov 2019. It’s been overwhelming! Even though it’s only been 3 months...it feels like I’ve stressed enough for a lifetime. I hate having my son go through this. I’m praying for cures!

Cassie11 profile image
Cassie11

From Leicester, East Midlands of England.

AndW65 profile image
AndW65

GIbraltar 🇬🇮

Helena303 profile image
Helena303

I’m from London.

tenja profile image
tenja

Aberdeenshire Scotland.

Gordonek profile image
Gordonek

Spend my time between Glasgow, Scotland and Michalow, Poland

IrishSarah profile image
IrishSarah

What a lovely thread! Dublin, Ireland ☘️ 🇮🇪

Inan profile image
Inan

Originally from North Wales now in Suffolk,England

nightshadow profile image
nightshadow

Near Los Angeles, CA, USA

mother2britton profile image
mother2britton

Montana, USA

Daisy-May profile image
Daisy-May

Worksop Nottinghamshire

Daisy-May profile image
Daisy-May

Hi I'm in Worksop Nottinghamshire 🙋

You may also like...

New MPN Voice website

supported as of February 2021. We do hope that you find this new site to have a fresher look, be...

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Manchester

The video of the forum is now available to view on the MPN Voice YouTube channel. You can also...

Three MPN Voice Patients’ Forums confirmed

attend any of the forums regardless of where you live or which hospital you attend, if you are...

MPN Voice Living with MPNs Day 2019

event. Please note that you cannot register for this event via MPN Voice.

Running the Great North Run for MPN Voice

Good evening all, I am another of the loonies running the GNRun for MPN Voice.  I feel privileged to