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Myeloproliferative neoplasm heroes honored

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Kathy LaTour blog image

One of my favorite things about what we do at CURE is to honor those who help behind the scenes to support and educate patients and their families and friends. Every year we hold the Extraordinary Healer award to honor a nurse who goes above and beyond, and last year we added a new award event where we honor eight heroes who have served those with myeloproliferative neoplasms (MPNs). While MPNs are not seen as cancer because they don't act like malignancies, MPN patients and those who have rare cancers share in many of the side effects of treatment and possible early mortality, as well as the lack of information and support for what they are experiencing. Those suffering from this family of blood disorders not only have a complicated name to remember but also a complicated definition for one of eight types of neoplasms included in the MPN category. Within the eight, three of the neoplasms are related to a gene that produces a protein that impacts the growth of the conditions. Sometimes called the "classic" MPNs, these three are Polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis (PMF). Those with PV have an excess of oxygen-carrying red blood cells, often accompanied by an elevated platelet count that could result in life threatening blood clots. ET is driven by an overproduction of platelets, which can slow the flow of blood and increase an individual's risk of clotting. PMF develops when the blood stem cells fail to mature properly, resulting in decreased levels of red blood cells, white blood cells and platelets. This eventually results in a scarring effect in the bone marrow impacting the marrows ability to form new cells. Nearly 300,000 Americans live with one of these classic MPNs, and, because they are rare, those who can provide help and support to the newly diagnosed have become increasingly important.Last year in conjunction with Incyte, CURE recognized eight MPN Heroes, patients and healthcare professionals who have committed to these diseases either personally or professionally. The MPN Heroes were recognized for either their individual commitment to patients by providing guidance, education or support above and beyond, or a broader commitment to the MPN community, meaning leadership in developing services and programs addressing the needs of MPN patients their families, friends, caregivers and medical professionals. This year eight MPN Heroes will again be honored and CURE is collecting nominations now until September 12, 2014. So, if you know of someone who has made a difference in the lives of those with MPNs now is the time to nominate them as an MPN hero.

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