Julia Olff has been living with myelofibrosis (MF) since 2008. She was first diagnosed with essential thrombocythemia (ET) a year before that after routine blood work. The ET diagnosis was a total surprise and one she initially didn’t take that seriously. Myeloproliferative neoplasms had only just been reclassified as cancer by the World Health Organization in 2008. The weight of the diagnosis wasn’t as frightening until she started doing some research and saw the dire information online about MF progression and impact on survival.
As a health educator, and patient advocate and a former hospital administrator at Memorial Sloan Kettering Cancer Center, Julia also knew having a rare disease meant she needed to find a physician with substantial experience with the disease; the local oncologist had never treated a patient with MF. Because of her work, she had access to hematologists and oncologists. Julia’s search led to Gail Roboz, Director of Leukemia at Weill Cornell in NYC. Julia has experienced the benefits of having a strong and caring therapeutic relationship with Dr. Roboz. She has learned firsthand how valuable the support, expertise, and kindness of an MPN treatment team can be for physical and emotional well-being.
Julia has become more symptomatic over the past 5 years, and has experienced several hospitalizations for acute events. She has been taking Jakafi for 4 years now, trying to eat well every day, walk and pace herself. Julia gave up full time work and works part time as a freelance consultant for healthcare communications clients. She is also a Patient and Family outreach volunteer and a First Connection Peer Volunteer for people with MF for The Leukemia & Lymphoma Society (LLS).
Julia is a New Yorker but admits she now loves her suburban life in New Jersey. She shares her home with her wonderful husband (and caregiver) and blended family of 5 children (some home, some at college, some grown up). She spends her days in her home office in the sun with her old dog Jax, and cat brothers, Milo and Zeus.