"With an orphan disease, the support can be hard to find. I found that support at the MPN research foundation." - Juan Alderete, PV '06. On Hydroxurea/baby-aspirin and living a quality life! Photo credit: Marianne Williams

How to Cope

If you or someone you care about has been diagnosed with a myeloproliferative neoplasm (MPN) – particularly polycythemia vera, essential thrombocythemia or myelofibrosis, you’re not alone. Following are suggestions for newly diagnosed patients and others who have already begun to take control of their disease.

10 Steps MPN Patients Should Take

1. Get a second opinion. If you aren’t already under the care of a hematologist specializing in MPN it might be time to consider seeking a second opinion. There are resources available to help you find a doctor or treatment facility in your area that understands the particular needs of MPN patients. Need help? Just ask us.

2. Get up to speed on your disease. MPN are rare diseases. Whether you have polycythemia vera, essential thrombocythemia or myelofibrosis, chances are you will have 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 and reading patient brochures and newsletters from the MPN Research Foundation.

3. Track important information in a paper or electronic file for easy reference in the future. This is especially important if you have multiple doctors treating you. Some important information to track: Notes from your doctor appointments, Answers to your questions from your doctor; Dates of appointments; Test results; Blood cell counts; Medications and dosing schedules; Prescription refills 

4. Read stories from other patients who have been diagnosed with and are coping with their disease, or share your own story.

5. Find support groups. Some patients find that talking about their disease with other patients is helpful. There are both online and in-person support groups that offer a forum to talk about MPN with people who understand what you are going through. Click here for a directory.

6. Learn about clinical trials. Research produces leads for doctors and pharmaceutical companies to pursue when designing new treatments. Once designed, these new treatments must be tested in humans to figure out proper dosage, side effects and, most importantly, whether it works better than the best currently available option. Especially for orphan diseases like MPN, it is very important to recruit enough patients to thoroughly test whether a new treatment works to fight MPN. If you are considering a clinical trial, talk to your doctor. It may or may not be the right course of action for you, but knowledge is power.

7. Read about patient options such as drug reimbursementfinancial assistance and available treatments.

8. If you're new to this, consider signing up for a peer-to-peer patient matching program. Or if you've been around the MPN universe for a while, consider becoming a mentor.

9. Learn more about research we fund.

10. Get involved. The MPN community is relatively small but highly motivated. Everyone has a role to play, from spreading the word about MPN, starting a support group, joining a clinical trial, raising money for critical MPN research, making your own donation, or hosting an event. Pick your level and improve your outcome. Click here to get in the game.


 

 

 

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