MPN Voices Out Loud
9 episodes - English - Latest episode: over 1 year ago -MPN Voices Out Loud is a podcast series focused on educating and supporting the myeloproliferative neoplasm (MPN) community. Listen for interviews with people living with MPNs, discussions with Healthcare Professionals, and other interesting content for anyone who wants to learn more about MPNs. To learn more, visit MPN Voices Out Loud.
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Episodes
Patient and Caregiver Perspectives: Managing MPNs Together
September 23, 2022 15:00 - 19 minutes - 13.2 MBHear how caregivers can help patients affected by myeloproliferative neoplasms (MPNs) get the care they need by communicating the impact of MPN symptoms to Healthcare Professionals. Special guest actor, director, and health advocate LeVar Burton shares insights from Jeff and Summer as they work together to manage Summer’s myelofibrosis (MF). Caregivers Nancy, Tom, and John reveal tips for taking care of their loved ones—and themselves. · Download communication workbooks for patients and car...
Why FINE Is Not Enough When Speaking About the Impact of Your MPN Symptoms
May 17, 2022 19:00 - 27 minutes - 19.3 MBListen to patients impacted by myeloproliferative neoplasms (MPNs) discuss the importance of speaking up and spelling out how their MPNs affect them. Understand why saying they were “fine” was not enough for their MPN journeys. Tune in to discover patient stories, real life experiences, and useful tips to have informed conversations with your Healthcare Professional. Get the FINE Communication Workbook at fineisnotenough.com
LeVar Burton: MPN Self-Advocacy and Prioritizing Your Health
December 23, 2021 17:00 - 33 minutes - 22.9 MBTune in as actor, director, and health advocate LeVar Burton explores the importance of prioritizing your own health when living with the rare, chronic blood cancers called myeloproliferative neoplasms (MPNs). Burton is joined by Kathryn and Andrea, two MPN patients, as they reveal that the best way to manage progressive diseases like MPNs is through consistent visits with Healthcare Professionals. Hear them share how open, honest communication with their healthcare teams helps them get the ...
The Importance of Communication for People with MPNs
September 22, 2021 13:00 - 31 minutes - 21.8 MBListen to a Healthcare Professional, Incyte Oncology Clinical Nurse Educators, and patients discuss the rare, chronic blood cancers called myeloproliferative neoplasms (MPNs) and why informed conversations are important for proper patient care. Learn that when patients tell their MPN healthcare team how their condition affects their lives, they help ensure they get the care and support they need. Hear about telehealth and how regular check-ins are key for people with MPNs. Hear conversation ...
Matt & Josh: An MPN peer-to-peer discussion
January 12, 2021 17:00 - 24 minutes - 16.8 MBFor people living with a myeloproliferative neoplasm (MPN), such as polycythemia vera (PV), essential thrombocythemia (ET), or myelofibrosis (MF), it is not uncommon to sometimes feel alone on the MPN journey. That’s because MPNs are considered rare diseases. Connecting with an MPN peer to share information, insights, and experiences may help reinforce that you’re part of a greater community—and that you’re not alone on your journey. Hear from Matt and Josh, two members of the MPN Communit...
Matt & Josh: An MPN peer-to-peer discussion
January 12, 2021 17:00 - 24 minutes - 16.8 MBFor people living with a myeloproliferative neoplasm (MPN), such as polycythemia vera (PV), essential thrombocythemia (ET), or myelofibrosis (MF), it is not uncommon to sometimes feel alone on the MPN journey. That’s because MPNs are considered rare diseases. Connecting with an MPN peer to share information, insights, and experiences may help reinforce that you’re part of a greater community—and that you’re not alone on your journey. Hear from Matt and Josh, two members of the MPN Communit...
Dr. Krisstina Gowin on Living with MPNs
August 14, 2020 15:00 - 26 minutes - 18.2 MBListen to MPN expert Dr. Krisstina Gowin, Assistant professor of medicine in the division of Hematology/Oncology at the university of Arizona Cancer Center, and renowned comic book artist J.G. Jones discuss important topics for those living with an MPN, like the value of education and ways to work with your Healthcare Professional to be an advocate for your health. Dr. Gowin, J.G. Jones, and host, Gina, will also discuss the value of an individualized approach for patients with MPNs. Regist...
Comic Artist J.G. Jones: My MPN Story
July 09, 2020 16:00 - 22 minutes - 15.7 MBListen to renowned comic book artist, J.G. Jones talk about his myeloproliferative neoplasm (MPN) journey and his new portrait series, Rare Reflections: MPNs Unmasked, specifically created to reveal the powerful and personal stories of individuals who are also impacted by an MPN. J.G. is joined by Dr. Krisstina Gowin, an MPN expert who is also an assistant professor of medicine in the division of Hematology/Oncology, at the University of Arizona Cancer Center. See the Rare Reflections: MPNs...
Diagnosis, Symptoms, and Living with an MPN
May 11, 2020 16:00 - 24 minutes - 17 MBHear from an MPN expert—plus a group of real MPN patients! Learn about polycythemia vera, myelofibrosis, and essential thrombocythemia—the rare, chronic blood cancers known as myeloproliferative neoplasms, or MPNs. Listen to Andrea Larson from Incyte Corporation talk with Incyte oncology clinical nurse educator Paul Larson about important topics for people living with MPNs, like tracking symptoms to watch for signs of disease progression. Also hear from Wilma, Marilyn, Dave, and other memb...