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.