We Asked, You Answered: Part One 

  • MPNRF | September 27, 2021

    In our August Digest, we asked readers what was one thing they wished their clinician had told them at the start of their MPN journey. We appreciate each person who wrote in to share their perspectives, some of which are below.

    Two themes that were raised by multiple respondents were the importance of seeing an MPN specialist and finding support. We have resources on our website for both topics. You can find options for identifying hematologists familiar with MPNs here and view support options here.

    Carrie of North Carolina: I wish my doctor had told me two things: first, that there were hematologists in my area that actually specialized in PV, and secondly, what resources there were out there to learn more about PV and then told me of resources to connect with others dealing with the same thing.

    Sadhana of San Jose, California: I wish I had been advised to stay vigilant about drug side effects and also to report symptoms. Community hematologists really need to develop more expertise or else refer patients to MPN specialists.

    Rosemary of Gainesville, Florida: The one thing I wish I had known or was told at the start of my PV  journey: exactly what I was dealing with in terms of possible prognosis and if there were any active groups I could join. I feel alone in this fight because my family and friends don’t really understand how serious this condition is.

    Tim of Denver, Colorado: I wished that my initial doctor who diagnosed PV would have included or referred me to an MPN specialist.

    We’ll highlight some of the responses to the second question next month. If you’d like to share your thoughts on one piece of advice you would offer to someone newly diagnosed with ET, PV or MF, please send us an email at communications@mpnrf.org.