LIVING WITH AN MPN
Creating a Roadmap for Living with an MPN
No one expects to get diagnosed with an unpronounceable disease like Essential Thrombocythemia, Polycythemia Vera, or Myelofibrosis, let alone a chronic, rare cancer. But you do have the power to make the best of your situation. Whether recently diagnosed or seeking information on how to best manage your PV, ET, or MF, we’re here to help you and your loved ones navigate life with a myeloproliferative neoplasm (MPN).
Researchers are working to find a cure for all types of MPNs, including:
The only curative treatment is a stem cell transplant, which is used for some with Myelofibrosis or those who have converted to Acute Myeloid Leukemia. There are many other treatments in the pipeline that approach controlling the disease from different angles including inhibiting the mutations prevalent in the MPNs, preventing complications such as strokes and blood clots and reducing symptoms. While we work on finding a cure and better treatments, the resources available below will help you learn more about existing treatment options, clinical trials, financial assistance, and MPN specialists in your area.
The MPN community is large, diverse, and multi-tiered. No one knows what you’re going through better than another MPN patient or caregiver. For that reason, many people living with an MPN enjoy meeting and sharing their experiences with others who can relate. Everyone has something to share and something to learn.
Every person living with ET, PV, and MF has a story to tell. Here is a sampling of stories, told by people living with MPNs.