"Something So Rare" Documentary Sheds Light on Life With an MPN
Author: Voices of MPN
Incyte Corporation, in partnership with Academy Award®-winning filmmaker in the documentary short subject category Cynthia Wade, presents a powerful film series featuring people living with myeloproliferative neoplasms (MPNs). The ultimate goal of this effort is to inspire those impacted to become their own health advocates and bring widespread attention to this group of rare blood cancers.
In this series of intimate portraits, viewers are immersed in the lives of four people living with MPNs. The series culminates with "Something So Rare," a gripping compilation of all four stories. Meet Taja, Nick, Amy, and Barbara—brave people living with MPNs who opened their homes and their lives as they search for answers.
Watch "Something So Rare" now.
See below for the individual films on Taja, Nick, Amy, and Barbara.
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My disease is mostly invisible to the eye. On the outside, I look completely normal, but inside, I’m in extreme pain.
Taja is navigating a disease that is difficult for her family, friends and co-workers to fully grasp. It’s hard for Taja to even understand, as she was diagnosed with polycythemia vera (PV), a type of MPN, at an unusually young age.
I have these fights in my head. Will my symptoms get worse? Can I be there for my kids? Can I be there for my wife? The hardest thing about this is the unknown.
At 37, Nick’s life was just the way that he had envisioned. He was married to Kara, the love of his life, and they had a vibrant young son, but when he went in for a routine physical, suddenly everything changed. Through a blood test, Nick was stunned to learn that he had PV. In an instant, Nick is faced with a future different than he could have ever imagined.
I remember on the day I got the official diagnosis, when we were told it was myelofibrosis, I remember you immediately just lost it.
At first, I didn’t think I was going to be able to handle it.
Scott and Amy share their story and the challenges they face when their roles become "caregiver and patient" after Amy was diagnosed with myelofibrosis (MF) – another type of MPN. Together they realize the impact that this disease has had on their relationship and discover ways to find a balance in their marriage as they deal with Amy’s MPN journey.
This disease doesn’t define you, and this disease is not going to stop you.
More than 20 years ago, Barbara was diagnosed with PV. Following her initial diagnosis, she experienced additional struggles as her PV transformed into MF, forcing her to undergo a stem cell transplantation. Through it all, Barbara has learned that you are more than your disease.