Why Making Connections Counts
Author: Voices of MPN
When you’re living with a rare, chronic blood cancer like polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF), connecting with others about your experience may not always be easy. Perhaps you’re uncomfortable with the idea of "burdening" friends and family with your struggles, or maybe you simply don’t like being the center of attention with the focus on you and your condition. Whatever the case may be, it’s important to know that you’re not alone—and that there is a community of support within your reach.
Individuals who are impacted by these myeloproliferative neoplasms (MPNs)—including patients, caregivers, family, and friends—may lack access to the resources they need to understand their condition. This is why it is so important to raise your voice in support of MPN awareness. Sometimes, a few simple connections can help you discover more information to empower you to take an active role in your health and well-being.
Here are some suggestions to help you get started:
- Raise your voice—you don’t have to be a rock star to become an MPN advocate. Bring together your family members, caregivers, children, or grandchildren, and work together to help promote awareness of MPNs in your local community. Your actions, with the support of others, can help drive awareness about MPNs. Connecting with others affected by MPNs can help create supportive communities that unite organizations, Healthcare Professionals, patients with MPNs, and caregivers.
- Become a social (media) butterfly—social media is a great way for people to communicate and interact online. It can also help you make connections with others who are interested in MPNs. Social media—including Facebook, Twitter, YouTube, Pinterest, and many others—allows users to engage with each other in a social way, which can include conversations, comments, video, and other user-created information.
Spread your social media wings—and help spread MPN awareness—by sharing your voice on social media networks.
- Attend a local patient meeting—connect with an MPN specialist or meet other people living with MPNs. Register for a live, local Voices of MPN education session.
- Find out about upcoming events at mpnpatientevent.com or call 919-256-2472
- Join an MPN community support group—communities of people affected by myeloproliferative neoplasms are available to provide support. Reach out to one of these resources today.
- Band together in support of MPN awareness—show your support for people living with MPNs by wearing an MPN bracelet—and then starting up a conversation about MPNs when someone asks you about it.
- Register to order bracelets and start promoting awareness.
- Celebrate MPN Awareness day—MPN Awareness Day falls on the second Thursday of September. While creating awareness of MPNs is always important—it is particularly so during the month of September, when MPNs are recognized as part of Blood Cancer Awareness Month.
- Visit the MPN Awareness Day page to learn more.
- Become a Community Voice Champion—Find out how you can share your story with the MPN community.
- Register to join the CHAMPN Program
- Connect one-on-one with members of the MPN community—Learn how you can talk to an MPN peer, who knows what you’re going through.
- Register for CHAMPN Connections
Raising your voice begins with taking action—even if that means starting with something small, like making one meaningful connection. Gather information for yourself, your friends and family, so that you can become partners in your healthcare decision-making. Gain strength by connecting with others who are affected by MPNs so that your voices are heard and your stories are shared. Even if you only reach out to one other person, it can make a powerful difference. Remember, every connection counts! And you can start raising MPN awareness one connection at a time.