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Living with an MPN: The FINE Episodic Series

Voices of MPN

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

Image of Micky Image of Micky

MICKEY

When I was diagnosed…I took the position to tell people verbally that I was fine…when, in fact, I was lying.
 
Mickey, Louise, and Christine describe how they learned to accept and talk about their MPN diagnosis.

SPEAKING UP ABOUT SYMPTOMS OF MPNs: TAKING AN ACTIVE ROLE IN YOUR CARE

Image of Louise Image of Louise

LOUISE

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.
 
Watch Mickey, Louise, and Christine describe why it’s important for people living with an MPN to speak up to their healthcare team about the impact of living with an MPN.

SPEAKING UP WITH YOUR MPN HEALTHCARE TEAM: ADVOCATING FOR BETTER CARE

Image of Christine Image of Christine

CHRISTINE

If you have an MPN, you see an MPN specialist. They see MPN patients every day.
 
Discover how Mickey, Louise, and Christine found ways to become better advocates for their own care.

SPEAKING UP AS AN MPN CAREGIVER: OUR SIDE OF THE STORY

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NANCY

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….
 
Watch caregivers Nancy, John, and Tom as they talk about what it means to be a caregiver on the MPN patient journey.

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