In this session of the Patient Cafe®, a group of MPN patients share their experience in communicating with family, friends and others about their condition. Each person has a unique perspective on how they’ve relayed information to their employer, educated their family and friends or, in some cases, kept to themselves for a period of time.
A panel of MPN patients and care partners discuss taking back control and share their tips for managing their new normal after diagnosis.
MPN patient and moderator, Andrew Schorr, leads a panel of MPN patients in this session of Patient Cafe®. The panel of patient advocates includes David Denny a Myelofibrosis (MF) patient, Andi Malitz an Essential Thrombocythemia (ET) patient, and Alisa Rouse a Polycythemia Vera (PV) patient. The panel shares their inspiring stories, how MPN has impacted their life, and what they do to live well with their disease. Lastly, they remind us to:
- Advocate to get the right treatment for you
- Remember you are not alone
- Use your disease for good
Check out the full video below to hear from four MPN patient advocates.