Patient Videos

Module 1: Understanding MPNs

Ben's story: How did you find out you had a myeloproliferative neoplasm (MPN)?

Ben shares how he was unexpectedly diagnosed with a myeloproliferative neoplasm (MPN) during routine bloodwork for a new job. His high platelet count led to further testing and a diagnosis of essential thrombocythemia (ET). Reflecting back, Ben realized that earlier symptoms like migraines and easy bruising may have been early signs of the condition.

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Ben's story: What challenges and successes have you had with your MPN treatment?

In this video, Ben discusses the challenges and successes he's faced during his MPN treatment journey. Initially diagnosed with essential thrombocythemia (ET), his condition later progressed to myelofibrosis (MF). He struggled early on with limited information and a provider who dismissed his symptoms. After switching to a provider with more expertise in MPNs, his treatment improved significantly. A major milestone was his successful stem cell transplant. Today, Ben values the support he received and shares his story to help others facing similar challenges.

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Ben's story: What advice do you have for others on their journey with an MPN?

In this video, Ben offers advice to others living with a myeloproliferative neoplasm (MPN). He emphasizes the importance of being your own advocate by asking questions, speaking up, and seeking answers when something doesn't feel right. He also highlights the value of a strong support system, encouraging others not to face challenges alone. Ben credits his own journey's success to supportive family, friends, and connections with others who've experienced similar treatments.

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Module 2: Essential Thrombocythemia (ET)

Janeana's story: How did you find out you had essential thrombocythemia (ET)?

Janeana shares her essential thrombocythemia (ET) diagnosis journey. She experienced unusual, persistent fatigue and, as a physician, advocated for herself while exploring possible causes. Routine lab tests and a thyroid workup didn't reveal the problem at first, but she noticed consistently elevated platelet counts in her medical records. Bringing this to her doctors' attention eventually led to a referral to a hematologist and her ET diagnosis.

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Janeana's story: What challenges and successes have you had with ET treatment?

In this video, Janeana discusses the challenges and successes she has experienced during her treatment for essential thrombocythemia (ET). She explains that early on, navigating her symptoms and the healthcare system was difficult, especially with debilitating fatigue and providers who weren't always familiar with ET. Successes came through connecting with an empathetic care team, using tools like the fatigue scoring tool, and engaging with the MPN community, which helped her feel supported and less alone.

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Janeana's story: What advice do you have for others on their journey with ET?

In this video, Janeana shares advice for others living with essential thrombocythemia (ET). She emphasizes the importance of community, support, and feeling comfortable being open and vulnerable. Janeana encourages patients to ask questions, explore their options, and work with providers who listen and respect their concerns. She also reassures others that seeking second opinions, taking time to decide, and advocating for individualized care are all valid and empowering parts of the journey.

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Module 3: Polycythemia Vera (PV)

Dana's story: How did you find out you had polycythemia vera (PV)?

Dana shares how she learned she had polycythemia vera (PV). During a routine primary care visit in 2019, bloodwork revealed very high platelet counts, prompting repeat testing and a referral to a hematologist. She was initially diagnosed with essential thrombocythemia, but further evaluation, including genetic testing and a bone marrow biopsy, showed rising hemoglobin and hematocrit levels, leading to a PV diagnosis. Looking back, Dana recognized long-standing symptoms and abnormal labs dating back to childhood.

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Dana's story: What challenges and successes have you had with PV treatment?

In this video, Dana discusses the challenges and successes of her polycythemia vera (PV) treatment. Upon her diagnosis of PV, she was prescribed a "watch-and-wait" treatment protocol along with taking a daily baby aspirin and undergoing therapeutic phlebotomy. She describes struggling with iron deficiency, exhaustion, and brain fog while undergoing therapeutic phlebotomy. Transitioning to interferon treatment significantly improved her symptoms, eliminated the need for phlebotomy, and helped her feel more in control of her disease.

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Dana's story: What advice do you have for others on their journey with PV?

In this video, Dana shares that one of the most important lessons from her polycythemia vera (PV) journey is the value of self-advocacy, education, and support. She encourages patients to research treatment options, connect with other patients, and not feel limited by a "watch-and-wait" approach if symptoms or concerns persist. Dana also recommends seeking care from an MPN specialist, building a strong support system, and addressing mental health needs as part of managing PV.

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Module 4: Myelofibrosis (MF)

Ned's story: How did you find out you had myelofibrosis (MF)?

Ned shares that he learned he had myelofibrosis (MF) after years of mild anemia that didn't improve with iron supplements. When he began experiencing night sweats and bone pain, his primary care doctor referred him to a hematologist, who quickly ordered a bone marrow biopsy that confirmed the diagnosis. A second opinion validated the results, and Ned later pursued further care and clinical trial options through self-advocacy.

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Ned's story: What challenges and successes have you had with MF treatment?

In this video, Ned describes both the challenges and successes of his myelofibrosis (MF) treatment journey. After enrolling in a clinical trial combining ruxolitinib and the investigational drug pelabresib, he experienced significant drops in hemoglobin that required frequent transfusions, along with taste changes, including ageusia (total loss of taste) and dysgeusia (distorted taste). Frequent travel to the clinical trial site was another challenge. Over time, his health improved, with better blood counts, reduced bone marrow fibrosis, and a decline in his JAK2 mutation level. He also shares how he tracks symptoms and lab trends over time to understand how he's doing between visits.

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Ned's story: What advice do you have for others on their journey with MF?

In this video, Ned shares advice for others living with myelofibrosis (MF), emphasizing patience and self-advocacy. He explains that MF develops slowly and treatment responses can take years, not weeks, so setting realistic expectations is important. Ned encourages patients to ask questions, make sure they understand their care, and bring a trusted support person to appointments to help listen, take notes, and manage the emotional weight of the diagnosis.

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This educational activity has been developed by MPN Research Foundation in collaboration with Mechanisms in Medicine Inc.

This activity is supported by independent educational grants from Disc Medicine, GSK, Incyte, Merck, PharmaEssentia, Sumitomo Pharma, and Takeda.

We are also deeply grateful to the individual donors whose generosity supports the MPN Research Foundation's mission and programs like this one.

Thank you to the funders of You And MPN. All content is developed independently by MPN Research Foundation and Mechanisms in Medicine Inc., in collaboration with an Expert Faculty group; funders are allowed no influence on the content of You And MPN: Animated Patient^® Guide to Myeloproliferative Neoplasms.

Disclaimer: The information provided is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your doctor about any questions you may have regarding a medical condition. The visuals provided are meant to be representations only. No specific brand is being promoted or endorsed.

This website is part of the Animated Patient^® series developed by Mechanisms in Medicine Inc., to provide highly visual formats of learning for patients to improve their understanding, make informed decisions, and partner with their healthcare professionals for optimal outcomes.