Living in Paradox

Blog author, Marina Sampanes Peed, lived through an eight-year Myeloproliferative Neoplasm (MPN) journey with Polycythemia Vera that led to Myelofibrosis and bone marrow failure, and ultimately a blood stem cell transplant. Thanks to an unrelated stem cell donor and numerous blood and platelet donors, Marina is now in complete remission from Myelofibrosis. She now helps other patients through their journeys.

 

 

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Blog Intro
Living in Paradox

 

 

 

 

November: You Are Not Alone

When people with a MPN gather, it is easy to forget that these blood cancers are rare. MPN advocates from two dozen countries describe patient experiences that are eerily similar:

  • Correct diagnosis follows one or more years of signs or symptoms.
  • Clinician who made diagnosis did not provide current information about the disease nor treatment options. (Some discount while others magnify the risks.)
  • Delayed in receiving appropriate treatment.
  • Many “Quality of Life” symptoms are not recognized and remain untreated, especially in women.
  • Access to and participation in clinical trials is difficult.
  • Support from the MPN patient community is highly valued.

Most hematologists rarely, if ever, encounter a patient with a MPN. Because the diseases manifest differently, experience with a few patients is not sufficient to develop expertise. If your local physician is not proactive, you may insist he/she confer with a MPN specialist regarding your care. The experts regularly consult with general practitioners and hematologists regarding management of their MPN patients.

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