Living with an MPN: The FINE Episodic Series
Author: Voices of MPN
The FINE Episodic Series presents a compelling, intimate look at the experience of living with a myeloproliferative neoplasm (MPN). The four videos are filmed by real patients and caregivers who share their unique perspectives on learning to live with an MPN.
The episodes are an evolution of the FINE (Fine Is Not Enough) campaign, an important education and awareness initiative focused on improving MPN communication. The FINE campaign presents stories from individuals living with MPNs who discover why it’s important to speak up about MPN symptoms with their healthcare team and spell out how their disease affects them. Their stories demonstrate why saying “I’m fine” is not enough for an MPN journey.
The FINE Episodic Series combines a variety of insights about common situations faced by patients and caregivers:
- How can patients move beyond diagnosis to accept their disease?
- Why is it important for patients to speak up about symptoms to their healthcare team?
- What can patients do to advocate for better care?
- What is the role of caregivers in supporting the patient journey?
Scroll below to meet Mickey, Louise, Christine, and their caregivers as they talk about coping with the rare, chronic blood cancers that are MPNs.
Watch the FINE episodes now.
Click the button to watch the videos.
SPEAKING UP ABOUT MY MPN DIAGNOSIS: THE JOURNEY TO ACCEPTANCE
When I was diagnosed…I took the position to tell people verbally that I was fine…when, in fact, I was lying.
SPEAKING UP ABOUT SYMPTOMS OF MPNs: TAKING AN ACTIVE ROLE IN YOUR CARE
If you continue to say you're fine and you're not feeling fine, you're telling a lie to yourself and to your doctors. We need to be forward about it.
SPEAKING UP WITH YOUR MPN HEALTHCARE TEAM: ADVOCATING FOR BETTER CARE
If you have an MPN, you see an MPN specialist. They see MPN patients every day.
SPEAKING UP AS AN MPN CAREGIVER: OUR SIDE OF THE STORY
My role as a caregiver is to help monitor how he feels and make sure that he’s good, that he takes care of himself….