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Speak Up and Spell It Out: A Caregiver’s Role

VOMPN author

Author: Voices of MPN

If you are taking care of a loved one diagnosed with a rare, chronic blood cancer like a myeloproliferative neoplasm (MPN), your role as a caregiver is an important part of their MPN journey. Caregivers are often quite familiar with their loved one’s habits and preferences. They may be the first to notice new or changing symptoms or observe the impact an MPN may be having on their loved one's quality of life and well-being.

Caregivers can help identify possible signs of disease progression while also encouraging loved ones to take an active role in their care by speaking up about their symptoms and how they may be changing.

Here are 3 useful resources to help you if you're on an MPN journey with someone you love:

THE MPN CAREGIVER COMMUNICATION WORKBOOK

It’s helpful to learn all you can about MPNs such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF). It’s especially important to know that they are considered to be progressive conditions. That means they can change and worsen over time. Check out the MPN Caregiver Communication Workbook to help you notice symptoms that your loved one may not realize or acknowledge, and provide additional support to them as they navigate their MPN journey.

DOWNLOAD WORKBOOK

THE FINE CAREGIVER VIDEO

Tune in to see real caregivers who share their experiences and expectations in supporting loved ones on an MPN journey. Listen to what they have to say about noticing MPN symptoms, encouraging honest communication with Healthcare Professionals, and providing for their own self-care. Watch the video below.

 

PATIENT AND CAREGIVER PERSPECTIVES: MANAGING MPNs TOGETHER

Actor, director, and special guest LeVar Burton is featured in a Voices Out Loud podcast focused on patient and caregiver perspectives. Hear about the caregiver’s role in helping patients communicate to Healthcare Professionals how physical and emotional MPN symptoms affect their loved ones.

LISTEN TO PODCAST

TAKE CARE OF YOURSELF

It’s important to provide reassuring care to someone you love when they’re living with an MPN. But your well-being is important, too. Try to find time to rejuvenate, relax, and recoup—even if it’s just a walk around the block or a few moments of mindfulness.

Remember, you’re on the MPN journey together. By teaming up with each other and MPN Healthcare Professionals, you can better understand the current status of your loved one’s disease and take action when something may require additional care management.

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