If you’re living with myeloproliferative neoplasms (MPNs), you’re already aware of the impact the condition can have on your life — but chances are high that other people in your orbit don’t know as much as they could about the disease. That’s why the U.S. Congress established September as Blood Cancer Awareness Month in 2010.
It can be hard when your friends and family don’t understand what you’re going through. It can also feel difficult to say "no" to loved ones who don’t understand your situation because you might worry about how your relationships will be affected.
Raising awareness about MPNs is important so your friends, family, acquaintances, and colleagues can better understand how to support you.
“It's good to have people who understand what you are going through,” said one myMPNteam member.
Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics about MPNs. Learn more about the causes, signs and symptoms, and treatments for the condition.
Myeloproliferative neoplasms are a group of chronic blood cancers closely related to leukemia, lymphoma, and myeloma. Each type of MPN involves the overproduction of one or more types of blood stem cells — red blood cells, white blood cells, or platelets — in the bone marrow. The excess of abnormal blood cells can lead to a variety of symptoms, including fatigue, headaches, blurred vision, and night sweats. The three main types of MPNs are polycythemia vera, essential thrombocythemia, and primary myelofibrosis.
Treatment options for MPNs include chemotherapy, targeted medications such as kinase inhibitors, and supportive treatments to manage symptoms related to the overproduction of blood cells.
After you’re armed with information about MPNs, you can share it with others. The fastest and least expensive way for this kind of advocacy is through social media. You can post information about MPNs, share details about your condition, and join communities of other people who are also working to raise awareness about myeloproliferative neoplasms.
For instance, you might consider sharing the MPN Patient Bill of Rights infographic, which was created by the MPN Research Foundation.
To ensure your message reaches as many people as possible, consider using an appropriate MPN-related hashtag, like #MyeloproliferativeNeoplasms. This way, your posts will be seen by more people who have the same interests as you do, and they’re likely to share and comment.
Social media helps raise awareness for the condition, and it also allows other people with MPNs to realize they aren’t alone. Joining a social network for people with MPNs, such as myMPNteam, can also help you connect with others.
Another way to raise awareness about MPNs is to participate in an activity dedicated to the cause. You can walk or run for MPNs, play bingo, host a silent auction or fundraiser, or even create a unique fundraising event that matches your interests. You can help other people understand more about MPNs while having fun and raising money for the cause.
If you have money to spare, consider donating to organizations such as the MPN Research Foundation, which allows for further research into ways to better treat and manage the condition.
In addition, remember to engage in self-care. It is emotionally taxing to educate others about your lived experiences, so know your limits and understand when to put your mental well-being first.
On myMPNteam, more than 1,500 people living with MPNs come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Share your MPN journey in the comments below, or start a conversation by posting on your Activities page.