• JEAN

    Polycythemia vera (PV)
    Patient Profile: MPNRF Patient Impact Council

    “The Symposium was a wealth of information, and with the encouragement of the MPN Research Foundation, I began advocating for myself and others,” recalls Jean. “Doctors at that meeting encouraged me to see an MPN Specialist, and that was the beginning of finally getting help, and becoming a patient advocate.”

    She knew firsthand about the need for increasing knowledge, information, and support for MPN patients, inspiring her to form the Pittsburgh MPN Support Group later that year.

    “My doctor encouraged me to mentor newly diagnosed MPN patients…,” she continues. She has expanded that advocacy work by speaking on behalf of ET, PV, and MF patients ever since, at MPN Research Foundation and biopharma events, through media outlets that educate about cancers, and annually, to university students in a medical sociology class. In 2018, she was honored as an ‘MPN Hero’ by Cure Magazine.

    “My experiences have led me to coin a saying, ‘Living with a rare disease isn’t so rare when you have one!’”

    Jean has taken Jakafi (ruxolitinib) for her PV for some 10 years. While this JAK inhibitor was only approved for myelofibrosis at the time, it is now approved for PV, and has been very beneficial for her, relieving what she describes as “horrendous 24/7 symptoms,” normalizing her blood counts, and eliminating the early evidence of fibrosis that is what allowed her to qualify for Jakafi treatment at the time.

    She is profoundly aware that had she not been seeing an MPN specialist, it is most likely that she would not have had access to this life-altering treatment.

    Her goals include imparting the latest information not only to patients but also to more hematologists, beyond just MPN specialists, and primary care physicians. “It is a great honor to work with MPNRF, bringing new opportunities to learn and spread the awareness of MPNs,” says Jean. She is hopeful that her participation on the Patient Impact Council will give her the ability (“and credibility”) to bridge more local docs with researchers.

    “Hope for patients will come with the awareness. The docs think about what’s next; I’m not sure the patients do. Letting them (hematologists) know what’s available can give hope to inform their patients…to know that down the road, if this drug stops working, there is still something to fall back on to try.”

    Jean also wants to advocate for more research beyond the groundbreaking investments currently being made toward more myelofibrosis treatments. “I hope the money being put into MF trickles down” to more therapies for PV and ET.

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. It does not represent the views or opinions of anyone associated with MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

    Meet JEAN
    SEE ALL Polycythemia vera (PV)