10 Tips for To Get Started Understanding your MPN
As a leader in MPN research and education, we know that an MPN diagnosis can be a confusing and emotional experience. Whether you've just been diagnosed, are experiencing new symptoms or want to take initiative to understand more about your PV, ET or MF, here are 10 practical tips for coping with your MPN:
- Become informed about your disease. MPNs are rare diseases. Whether you have polycythemia vera, essential thrombocythemia or myelofibrosis, chances are you will experience a steep learning curve. Rather than feeling overwhelmed, take it day by day and be sure to ask your doctor for help. Start by visiting Learning About MPNs, reading the NCCN MPN patient guidelines, and reading patient brochures and newsletters from the MPN Research Foundation.
- Keep track of important information in a paper or electronic file. It’s not unusual for MPN patients to be treated by multiple doctors. To stay on top of treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information. You can use the myMPN registry to do this, either with sharing your data with MPN researchers or choosing not to.
- Read other patients’ stories and share your story. The MPN community is a place where patients learn from each other. Read the stories of patients who are coping with an MPN and share your story with others.
- Find a mentor. Peer-to-peer matching programs can be valuable for identifying a seasoned mentor who can help you walk through the initial stages of an MPN diagnosis. As you become more knowledgeable about the challenges MPN patients face, you may eventually consider becoming a mentor for other patients. Imerman’s Angels and MPN Voice both have mentoring services for MPN patients.
- Get a second opinion if you need one. Make sure you consult with a physician who has experience treating MPNs. Don’t be afraid to seek a second opinion. There are resources available to help you find a doctor or treatment facility that understands the unique needs of MPN patients. Start here to find a hematologist near you.
- Find a Support Group. Many MPN patients and their families find that it’s helpful to talk about their disease with other patients. Find an online or in-person support group to talk about MPNs with people who understand your concerns and emotions.
- Find out about clinical trials. Ongoing research is being conducted to find new treatments for MPNs. When new treatments are discovered, they must be tested to determine proper dosage, side effects and effectiveness. By learning about clinical trials, you can uncover opportunities that advance MPN treatments and possibly benefit your personal prognosis. Consult your physician to discover if clinical trials are an advisable course of action for you.
- Research your options. Information is an important part of changing your MPN prognosis. The more you know, the more empowered you become in your fight against the disease. Read about patient options like drug reimbursements, financial assistance and available treatments for the information you need to manage your diagnosis and treatment.
- Learn more the research we fund. At the MPN Research Foundation, we are working to make a tangible difference in the treatment options that are available for people who have been diagnosed with an MPN. Learn more about trends in MPN research now, learn about our research impact and discover how we’re helping to improve the lives of MPN patients just like you.
- Make an impact for MPN research. The funds we’ve raised have largely come from people who were diagnosed with an MPN and their friends and family. They are having a direct impact on the future options for patients everywhere by stepping up to make a difference.