Christine’s MPN Story

Christine is a Healthcare Professional who was reluctant to talk with her doctor about symptoms of her myeloproliferative neoplasm (MPN). She often said “I’m fine” because it was easier than explaining how her polycythemia vera (PV), a type of MPN, impacted her life. Watch now to see why speaking up about her PV symptoms empowered Christine to get the care and support she needed from her MPN specialist.

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(Christine) I work in healthcare, and I have patients that come in and have a hard time opening up…. And then, on the flip side…I have the same problem….

(onscreen text) THERE ARE 2 SIDES TO CHRISTINE’S MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…

(onscreen text) FELT UNCOMFORTABLE SHARING MY SYMPTOMS

I DIDN’T KNOW WHAT QUESTIONS TO ASK

NEEDED TO FIND THE RIGHT HEALTHCARE PROFESSIONAL

EVERYTHING CHANGED WITH A SECOND OPINION

(onscreen text) CHRISTINE Diagnosed With Polycythemia Vera (PV) in 2015

(Christine) It's hard for a lot of people to open up to their physician at times...I find it hard. It's easy to say that you're just fine versus having a list of complaints….

When I was first diagnosed with PV, I really didn't know much about MPNs…so I was really reluctant to ask questions. I’d listen to what they had to say to me.

When I talk about…my symptoms, I feel like I'm whining…or I’m a burden to people.

When someone asks you how you're doing, you just say, "I'm fine. I'm good." …Sometimes it's easier just not to tell anybody what's going on….

(onscreen text) IT’S IMPORTANT TO SPEAK UP AND SPELL OUT THE IMPACT OF YOUR MPN SYMPTOMS

(Christine) I was having a lot of headaches. I was very fatigued. And I was starting to have pain in my feet, pain in my hands, and I really didn't tell my hematologist right away. I didn’t feel like I could share…and I just…I just held back.

…I didn't know these symptoms I was having…were from my MPN.

It's important to feel comfortable with your physician, and so you can open up and tell them, you know, the symptoms that you're feeling.

…We need to let our physicians know that we're not just fine…

(onscreen text) DETAILED SYMPTOM COMMUNICATION MAY HELP IDENTIFY EARLY SIGNS OF DISEASE PROGRESSION

(Christine) It is so risky when you do not open up to your physician. There might be subtle changes that you’re feeling, um, they’re not seeing in the blood work…but it could be an indication that things are changing with your disease…. I think it’s important to give all your symptoms.

…Instead of saying “just fine,” sometimes I find it’s easier to write things down…knowing there’s times where…maybe you just don’t feel like opening up…. It’s easy to pass a paper with some questions on it….

No question's a silly question. You need to ask whatever you want to ask. It's important.

(onscreen text) UNDERSTANDING HOW YOUR MPN IS AFFECTING YOU CAN LEAD TO MORE INFORMED CONVERSATIONS ABOUT YOUR CARE

(Christine) It's so important to try to gain more knowledge of your disease…. It'll help you feel more confident….

I now know what to look for with symptoms, what to ask my physicians.

(onscreen text) SEEKING OUT THE SPECIFIC SUPPORT YOU NEED CAN HELP EMPOWER THE JOURNEY AHEAD

(Christine) …After being diagnosed, I…had a second opinion. It was with a true MPN specialist.

They're the people that see these diseases every day…they're up on all the research….

I’m more of a partner with the hematologists I have today.

…And I can open up, and that is so important. It is empowering….

(onscreen text) BECAUSE FINE IS NOT ENOUGH FOR YOUR MPN JOURNEY

(Christine) You need to tell any physician that you see…how you're feeling. Don’t be “just fine.”

Let ‘em know what's going on in your life. Open up.

(onscreen text) Download communication tools to help empower your MPN healthcare conversations at Fineisnotenough.com

(onscreen text) This video is sponsored by Incyte Corporation.