(BPT) – February 28 is Rare Disease Day, an important time to raise awareness of and highlight the challenges faced by people living with or caring for those with rare diseases, including the myeloproliferative neoplasm (MPN) community. The 300 million people living with rare diseases experience countless obstacles, including getting diagnosed and receiving timely treatment.1
MPNs are a group of rare, chronic blood cancers, in which a person’s bone marrow does not function properly, causing it to produce too few or too many red or white blood cells or platelets.2 The three most common MPNs are polycythemia vera, myelofibrosis and essential thrombocythemia.2 MPNs can affect people at any age but are typically found in older adults, and are progressive, meaning they can change or worsen over time.2,3 Common symptoms of MPNs – including headaches, fatigue, dizziness, and night sweats – are nonspecific, so can be mistaken for something else, like stress or aging.3
Changes in symptoms, no matter how minor they may seem, could signal something serious, so it’s important for patients living with MPNs to monitor and closely track how they are feeling. Given symptoms can be subtle and difficult to assess, changes may go unnoticed in people living with MPNs until someone else points out how their life is impacted. Enlisting a support system can be a helpful way for patients to watch for any changes in their health and proactively bring up concerns with their care teams.
For those living with MPNs, find a system that works for you to track your symptoms and let your care team know of any changes right away. Tracking symptoms and how you’re feeling on a regular basis can lead to more proactive and informed conversations about treatment plans with your healthcare team.
To access more helpful MPN information and resources, visit https://www.voicesofMPN.com/hiding-in-plain-sight.
©2023, Incyte. MAT-HEM-03228 02/23
1. Rare Disease Day. What is a Rare Disease. https://www.rarediseaseday.org/what-is-a-rare-disease/. Accessed January 2023.
2. MPN Research Foundation. Understanding MPNs. http://www.mpnresearchfoundation.org/Understanding-MPNs. Accessed December 2022.
3. Leukemia & Lymphoma Society. Myeloproliferative neoplasms (MPN) research funded by LLS. https://www.lls.org/research/myeloproliferative-neoplasms-mpn. Accessed December 2022.