Just Diagnosed

10 Steps to Take After an MPN Diagnosis

As a leader in MPN research and education, we know that a diagnosis of PV, ET or MF 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 MPN, here are 10 steps to take after an MPN diagnosis.

  1. Learn how MPN Research Foundation can help you. MPNRF works every day to provide a welcoming community that educates and empowers MPN patients. We encourage you to explore our website so you can acquaint yourself with our available resources.
     
  2. Find a specialist. If you aren’t already under the care of a hematologist specializing in MPNs, we encourage you to seek one out. Visit Find an MPN Specialist to find a doctor or treatment facility in your area that understands the particular needs of MPN patients.
     
  3. Become informed about your disease. It’s important to become knowledgeable about your disease so that you can successfully advocate for yourself during your MPN journey. Ask your doctor for help, use MPN Research Foundation as a resource and sign up on our website to get the latest MPN news. 
     
  4. Research your financial options. Economic information is an important part of advocating for yourself. Click here to read about drug reimbursements and financial assistance programs for the treatments you need to manage your diagnosis.
     
  5. Stay on track. It is critical to maintain your important medical information so that you stay on top of your treatment routine. MPNRF’s online patient registry, myMPN, can help you keep track of questions/answers for your physician, test results, blood cell counts, medications, dosing schedules, prescription refills, etc.
     
  6. 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 by visiting the Patient Stories page on our website.
     
  7. Find support groups. If you’ve been diagnosed with an MPN it’s important to know that you’re not alone. Visit the Find Support section on our website to learn more about the many online and in-person support groups that offer a platform for you to connect with fellow MPN patients.
     
  8. Find a mentor. Peer-to-peer matching programs like Imerman Angels can be valuable for identifying a mentor who can help you walk through the initial stages of an MPN diagnosis. Visit Imerman Angel’s website at www.imermanangels.org to learn more about their service.
     
  9. Learn about clinical trials. By participating in clinical trials, you can help uncover opportunities that will advance MPN treatments and possibly benefit your personal prognosis. Visit our Find a Trial page to learn more and consult your physician to discover if clinical trials are an advisable course of action for you.
     
  10. Get involved. Are you looking for a way to join MPN Research Foundation in the fight against MPN? Visit the Make an Impact tab to learn more about starting a support group, enrolling in a clinical trial, making a donation, hosting a fundraising event, sharing your story and more.

Read about available treatments for your MPN cancer.

Vivienne

Polycythemia Vera

"I work full time and have a wonderful life. I do not let PV pull me down. I eat properly, exercise and have a wonderful family..."

Meet Vivienne

Take the steps you need to help change your prognosis.

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