For family or friends, knowing the right questions to ask—both with their loved ones and the care team—is a learning curve of its own. However, having open and honest conversations about one’s condition and any related symptoms are essential in disease management.
February 28th is Rare Disease Day, a time to speak up and raise awareness for the 300 million people worldwide living with a rare disease—including those who are part of the myeloproliferative neoplasm (MPN) community.
MPNs are a group of rare, chronic blood cancers that can affect people at any age but are more common in people over 50. MPNs are also progressive diseases, meaning they can change or worsen over time and sometimes transform into another blood cancer.
Proactive Conversations are Key
Given the potential subtle increase over time, symptoms may go unnoticed until someone else points them out. What might feel like small or inconsequential aches and pains could be manifestations of one’s MPN. The best way to manage an MPN is through active symptom tracking and open conversations with one’s care team to help learn about one’s condition and monitor any health changes that could signal something serious such as disease progression. Tracking symptoms closely and regularly is crucial, as common symptoms and their changes may be subtle, hard to assess or mistaken for something else, like stress or aging. Care partners and loved ones should speak up when they notice potential or worsening symptoms, such as fatigue, inactivity, unexpected weight loss, or any related change in health. Those conversations, as well as in-depth education about one’s specific condition, are vital to have and to share with the doctor and full care team. Sometimes it takes someone else to notice what you may have been dismissing.
“The chronic and progressive nature of MPNs makes it so important to monitor new or worsening symptoms, no matter how minor they may seem,” said Dr. Gaby Hobbs, MD, Massachusetts General Hospital. “Care plans are informed by what each individual patient is experiencing, which is why thorough monitoring of symptoms is the best way to continually provide the best support, beyond the reach of the doctor’s office.”
Break the Silence
Whether a patient or care partner, don’t be afraid to openly discuss MPNs and the associated symptoms, because it helps create an integrated care team and the best support possible. After all, it’s not a full care team without essential conversations at home and in the doctor’s office.
“When I think of someone’s MPN care team, it’s a cohesive group, made up of not only a practicing physician such as myself, but the nurses, family members and friends too. Establishing comfortable and consistent communication from each end sets the tone for a positive experience and the best patient outcome,” said Dr. Hobbs.
By regularly tracking symptoms, making note of reoccurring or changing patterns, patients and care partners can be empowered to discuss their disease management plan with their care team, and make any adjustments needed along the way. Whether you’re just starting your MPN journey or looking for ways to further advocate for your health, consider starting with an MPN tracker tool to help identify changes in health.
To access more helpful MPN information and resources, visit VoicesofMPN.com.
© 2023, Incyte. MAT-HEM-03236 02/23