Hi and welcome to the Macmillan Online Community although sorry that you needed to find us and especially sorry to hear about your PV diagnosis.
Polycythaemia Vera is rather rare and one of the family myeloproliferative neoplasms (MPN), in fact so rare we don’t have a specific group for it. But there have been a few folks pass through the Community over the years.
If you Polycythaemia Vera or PV into the search tool near the top and search ‘everywhere’ you can see their posts, you can also hit the reply button and post on their thread.
I was diagnosed back in 1999 with a rare skin Non Hodgkin’s Lymphoma Blood Cancer so do understand in part the challenges a diagnosis like this brings. All ways happy to talk more on this thread.
There are going to be specific Polycythaemia Vera support group available so do search them out.
You could also go to MPN Voice as it’s a support network for people with MPNs (myeloproliferative neoplasms), providing information and support.
We do have our Other cancers support group where folks with rare cancer can give and get support.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
You can search out Polycythaemia Vera information covering diagnosis and treatments in our Online Information and Support Section.
All the very best
