MPN Awareness: How To Get Involved | myMPNteam

Connect with others who understand.

sign up Log in
Resources
About myMPNteam
Powered By

MPN Awareness: How To Get Involved

Written by Anika Brahmbhatt
Posted on September 1, 2021

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.

Start by Raising Your Own Awareness

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.

Share Awareness Resources

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.

Participate in Awareness Activities

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.

Connect With Others Who Understand

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.

Posted on September 1, 2021
All updates must be accompanied by text or a picture.

Become a Subscriber

Get the latest articles about myeloproliferative neoplasms sent to your inbox.

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Anika Brahmbhatt is an undergraduate student at Boston University, where she is pursuing a dual degree in media science and psychology. Learn more about her here.

Related Articles

The question of how long I’ve had polycythemia vera (PV) is an interesting one. I guess you could...

Life With Polycythemia Vera: Ted’s Story

The question of how long I’ve had polycythemia vera (PV) is an interesting one. I guess you could...
As many as 77 percent of people diagnosed with cancer take dietary supplements, according to the ...

Supplements for Polycythemia Vera: 5 To Take and 3 To Avoid

As many as 77 percent of people diagnosed with cancer take dietary supplements, according to the ...
Turmeric is known primarily as a deep yellow-colored spice that is used to flavor Asian delicacie...

Turmeric and Polycythemia Vera: Can It Help MPN Symptoms?

Turmeric is known primarily as a deep yellow-colored spice that is used to flavor Asian delicacie...
This is a short guided meditation by Dr. Christiane Wolf on self-kindness, which gives you more s...

Self-Kindness When Struggling: 6-Minute Guided Meditation

This is a short guided meditation by Dr. Christiane Wolf on self-kindness, which gives you more s...
Myeloproliferative neoplasms (MPNs) are a category of blood cancers that include polycythemia ver...

Hospice Care for People With MPNs

Myeloproliferative neoplasms (MPNs) are a category of blood cancers that include polycythemia ver...
The term “palliative care” is often thought of as end-of-life care, or hospice care. However, it’...

Palliative Care: Improving Quality of Life With MPNs at Any Stage

The term “palliative care” is often thought of as end-of-life care, or hospice care. However, it’...

Recent Articles

Welcome to myMPNteam — the place to connect with others living with myeloproliferative neoplasms...

Getting Started on myMPNteam (VIDEO)

Welcome to myMPNteam — the place to connect with others living with myeloproliferative neoplasms...
Like all cancers, myeloproliferative neoplasms (MPNs) develop due to mutations, or changes, in ge...

What Is a JAK2 Mutation?

Like all cancers, myeloproliferative neoplasms (MPNs) develop due to mutations, or changes, in ge...
If you’re looking for a subject with complicated language and jargon that’s hard for the everyday...

Myeloproliferative or Myelodysplastic: Which Term Is Correct?

If you’re looking for a subject with complicated language and jargon that’s hard for the everyday...
When you’re first diagnosed with primary myelofibrosis (PMF), you may not experience any symptoms...

6 Signs Your Myelofibrosis May Be Progressing

When you’re first diagnosed with primary myelofibrosis (PMF), you may not experience any symptoms...
Because polycythemia vera (PV) is a slow-growing blood cancer without a cure, you may have the co...

How Polycythemia Vera Can Transform Into Myelofibrosis

Because polycythemia vera (PV) is a slow-growing blood cancer without a cure, you may have the co...
People with myeloproliferative neoplasms (MPNs) usually don’t notice symptoms early in the diseas...

Myeloproliferative Neoplasm Symptoms That May Go Unnoticed

People with myeloproliferative neoplasms (MPNs) usually don’t notice symptoms early in the diseas...
myMPNteam My myeloproliferative neoplasms Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close