Myelofibrosis

Is there a group for myelofibrosis or is it listed under another title

I have been having lots tests over a long period and just got confirmation of a diagnosis for myelofibrosis.

Are there others or a group etc concerning this condition. 

  • Hi Tim64,

    It’s Megan here from the Online Community team, thank you for posting your question, I hope the following information helps you to find the support you’re looking for.

    There’s the Myelodysplasia (MDS) & Myeloproliferative neoplasms (MPN) forum that we’ve recently added to the ‘Other cancers forum as we recognised members wanted a dedicated space to talk about their cancers. This space is for anyone looking for support with myelodysplasia (MDS) and myeloproliferative neoplasms (MPN) including essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF).

    You’re more than welcome to join this group and start a discussion. To become a member of the forum, you’ll need to click the grey ‘click to join’ button towards the bottom of the screen. Then to add a post and start a discussion, you can click the ‘+new’ or ‘+’ button near the group title. I’ll add an image below to help explain.

    Myelodysplasia (MDS) & Myeloproliferative neoplasms (MPN) forum page

    If I may, I’d like to tell you about how you can search the Community for related content using the search bar function at the top of the page. It will look like the image below.

    Online Community search bar with navigation options

    You may have already used this and found some ongoing discussions in the different Community groups. It’s best used from the homepage as it will search for related content throughout each group.

    I’m mentioning our search bar to you as you can search for conversations on our site by using some key words and phrases. I’ve searched ‘myelofibrosis’ as an example from our home page. It has found these search results and you can filter these by using the drop down options on the left hand side. Please do click on these links and join in the conversations if it would be helpful to you.

    If you’d find it helpful to talk, the teams on the Macmillan Support Line that can lend a listening ear. They’re also there to provide emotional support, practical information and financial guidance and to get in touch, you can call 0808 808 00 00, use live webchat or email during the hours of 8am-8pm every day.

    If you have any questions about using the Community or need some help accessing the support you’re looking for, please don’t hesitate to get back in touch with the Online Community team. You can email community@macmillan.org.uk or start a live webchat by selecting ‘Online Community help’ between the hours of 8am-8pm from Monday to Friday.

    We’re here to help and I hope the Community helps to show you that you’re not alone and there is lots of support available for you.

    Best wishes, 

    Megan
    Macmillan's Online Community team