1. Home
  2. Myelofibrosis (MF)
  3. Ned's story: What challenges and successes have you had with MF treatment? — Patient Video
Understanding and Diagnosing Myelofibrosis (MF) — Animation
Understanding and Diagnosing Myelofibrosis (MF) — Animation
Managing and Treating Myelofibrosis (MF) — Animation
Managing and Treating Myelofibrosis (MF) — Animation
Understanding and Diagnosing Myelofibrosis (MF) — Slide Show
Understanding and Diagnosing Myelofibrosis (MF) — Slide Show
Managing and Treating Myelofibrosis (MF) — Slide Show
Managing and Treating Myelofibrosis (MF) — Slide Show
Expert Videos
What is myelofibrosis (MF)?
1. What is myelofibrosis (MF)?
Why and how did my myelofibrosis (MF) arise?
2. Why and how did my myelofibrosis (MF) arise?
How is myelofibrosis (MF) diagnosed?
3. How is myelofibrosis (MF) diagnosed?
What are the signs, symptoms, and expectations of living with MF?
4. What are the signs, symptoms, and expectations of living with MF?
How is myelofibrosis (MF) managed and treated?
5. How is myelofibrosis (MF) managed and treated?
What new therapies are being developed for myelofibrosis (MF)?
6. What new therapies are being developed for myelofibrosis (MF)?
How can anemia be managed in myelofibrosis (MF)?
7. How can anemia be managed in myelofibrosis (MF)?
Patient Videos
Ned's story: How did you find out you had myelofibrosis (MF)?
8. Ned's story: How did you find out you had myelofibrosis (MF)?
Ned's story: What challenges and successes have you had with MF treatment?
9. Ned's story: What challenges and successes have you had with MF treatment?
Ned's story: What advice do you have for others on their journey with MF?
10. Ned's story: What advice do you have for others on their journey with MF?

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

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.

  • Share with family and friends:

Click here to take our SURVEY
Your feedback is important to us! We will use your feedback to develop future areas of content about myeloproliferative neoplasms which will help other patients, caregivers, and families.

Other Modules:

Understanding MPNs

Understanding MPNs

Essential Thrombocythemia (ET)

Essential Thrombocythemia (ET)

Polycythemia Vera (PV)

Polycythemia Vera (PV)

Understanding and Diagnosing Myelofibrosis (MF) — Animation
Understanding and Diagnosing Myelofibrosis (MF) — Animation
Managing and Treating Myelofibrosis (MF) — Animation
Managing and Treating Myelofibrosis (MF) — Animation
Understanding and Diagnosing Myelofibrosis (MF) — Slide Show
Understanding and Diagnosing Myelofibrosis (MF) — Slide Show
Managing and Treating Myelofibrosis (MF) — Slide Show
Managing and Treating Myelofibrosis (MF) — Slide Show
Expert Videos
What is myelofibrosis (MF)?
1. What is myelofibrosis (MF)?
Why and how did my myelofibrosis (MF) arise?
2. Why and how did my myelofibrosis (MF) arise?
How is myelofibrosis (MF) diagnosed?
3. How is myelofibrosis (MF) diagnosed?
What are the signs, symptoms, and expectations of living with MF?
4. What are the signs, symptoms, and expectations of living with MF?
How is myelofibrosis (MF) managed and treated?
5. How is myelofibrosis (MF) managed and treated?
What new therapies are being developed for myelofibrosis (MF)?
6. What new therapies are being developed for myelofibrosis (MF)?
How can anemia be managed in myelofibrosis (MF)?
7. How can anemia be managed in myelofibrosis (MF)?
Patient Videos
Ned's story: How did you find out you had myelofibrosis (MF)?
8. Ned's story: How did you find out you had myelofibrosis (MF)?
Ned's story: What challenges and successes have you had with MF treatment?
9. Ned's story: What challenges and successes have you had with MF treatment?
Ned's story: What advice do you have for others on their journey with MF?
10. Ned's story: What advice do you have for others on their journey with MF?

Other Modules:

Understanding MPNs

Understanding MPNs

Essential Thrombocythemia (ET)

Essential Thrombocythemia (ET)

Polycythemia Vera (PV)

Polycythemia Vera (PV)

 

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.

Copyright © Mechanisms in Medicine Inc. All rights reserved.

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.